I’ve had Bell’s palsy for over four months now and I have been pretty successful lately at pretending that I don’t have BP. I’ve gotten really good at avoiding mirrors and not smiling too big. Without even thinking, I cover my mouth when I laugh too hard. If my eye feels dry, I automatically blink it by hand so quickly that most people would never notice. I have enjoyed enough recovery that I don’t feel the incessant need to explain my situation to absolutely everyone I encounter AND I can actually drink coffee without a straw. 🙂 This has been a nice break. Now, it hasn’t been all rainbows, lollipops and sharpei puppies but last month I had about three weeks of steady (although slow) recovery, no twitching, and very little pain.
Until last week.
Last week the stupid Bell’s palsy gods decided that I have had it too easy of late. Apparently they thought they needed to smack me around a little. Those little suckers decided that I needed to feel like someone snuck into my bedroom while I was sleeping, twisted my head into an un-natural position, punched me in the face and then drugged me enough so that the next morning I would wake up lookin’ for the truck that must’ve hit me. (I haven’t felt that way since college btw) Okay, maybe I am exaggerating a bit. To be truthful, I only feel like that on my RIGHT side. 🙂
In all seriousness, my neck hurts. It only hurts on the BP side. It feels like a combo of slept-the-wrong-way-on-too-many-pillows and not-my-fault-car-accident-whiplash, which is an annoying, but not debilitating, combo. I am telling myself that it is a good sign. So far I am believing myself, but I am beginning to have my doubts. Afterall, I also tell myself that I am not too old to wear skinny jeans and that is an obvious falsehood. Nevertheless, most of my best facial improvements have been preceded by twitches, pain and soreness. So, I am hoping that this pain is just part of the process…and at least the left side feels good :).
Well crap. I thought I had it all figured out. Curse you Bell palsy gods! BP is sure a pain in the neck… literally and figuratively.
Filed under: bells palsy ramblings | Tagged: Bell's palsy |
Bell's Palsy? Seriously? 
Hi Vickie,
My doctor put me on Gabapentin. I can tell you it made a huge difference with the pain. Parts of my face still have the bruised feeling when I touch it, but I no longer have any pain at all. I know not all medicines are appropriate for all people but just wanted to offer this as a suggestion in case you wanted to look into it. My 2 biggest complaints were no blink and the pain. If I can get rid of those things, the rest is just an annoyance. Medication got rid of the pain…still waiting for the blink. Hope you are feeling better.
I’m so glad that you pain is being controlled! I was on perscription pain killer in the beginning (and NEEDED it). Now I can just take ibuprofin and it seems to take the edge off. I am more sore than anything, not the sharp pain like in the early days. Seems like whining about it online helps too 🙂
Hi Vickie, Came upon this by accident and it is a comfort to read. I am in my 13th week with little change, although my face looks symmetrical now and I can speak (and be understood perfectly) and no more straws or purees. SIGH! The no blink is annoying. I am now going through bottles of eye lubricant because my eye gets sore and blurry. I almost wish for the hit by a baseball bat feeling. Unfortunately, this is my second time with BP and the first time I believe that the pain and soreness were signs of healing. I have some soreness (had more in the beginning with the pain), but only sore if I touch certain spots. I also avoid mirrors. Took a big step last night to go out with my sister shopping. A woman asked my sister if I was her mother. She said because I looked sad and was not smiling. My first time with BP I started getting my “face back” at 3 weeks. This is so much longer and, although I hate to hear of anyone else with it, it does help knowing that there are others that take a long time, as well. The first time I was not on pain meds (needed them) and the second time I asked for them. Only needed to take 4 or 5 (to help sleep) and have not needed them since. I wish you well. It helps hearing other’s stories.
thanks for “stopping by” and sharing your story. I hope you experience more healing than pain. It’s so crazy how BP affects everyone differently and can be different every time. No rhyme or reason. I’m with you on the “no blink” thing, it’s so annoying! Let’s hope Santa gives us our blinks back for Christmas!
Vickie
Emergency Vickie
Tonight and last night, my right eye is going through a series of spasms and non stop winking. Have had my second bout of BP for just over four months. Up untill about two weeks ago, I thought I was on the mend and over all the pain. Currently my jaw feels like someone hit it and have a cold pack on my right side of face. Feels like forever typing this message, mistakes and all. Sucks to be fussy or I could be finished by now. Must admit the ice feels good. Now I am scared! What next? I thought I was almost at the end of it.
Lucy,
No need to be scared. The eye spasms and the pain (especially the jaw) are all part of the progression and healing for BP. Unfortunately, it seems as though doctors are not aware of any of this and BP sufferers can certainly tell you otherwise. There is no time limit for the healing or the symptoms/side effects. I still experience occassional days with aching and pain and it has been a little over 2 years since the onset of my second bout of BP. Good to hear that the ice is helping. I found, and still find, pain (and stress) relief from moist heat. Take a deep breath.
Thanks for your positive and thoughtful comments Jami. I am seriously fed up with the pain. Feel like I need to put my face in a sling. I have noticed that my sense of taste has become affected. Is this a normal part of BP? I also have tingling above my lip on the other side that is not affected. Should I be concerned? Also, I feel like my vision has become impaired in my right eye. That’s the affected side. Is this normal and will it return to normal? Sorry for all the questions but my doctor can’t give me any answers.
Taste, hearing, sight – all are affected. When my taste buds started waking up everything that I ate on the affected side tasted sweet like sugar. That did not last long and I now find that there are some foods that I used to like that no longer taste good (or as good) to me after BP. Hearing, at first, can be magnified so someone sneezing or music too close sounds like it is coming through a megaphone. I have traces of that left depending on the sound; however, I have an odd whooshing/fluttering that occurs when I move my jaw a certain way. As for the vision, that happened, too. Each time you blink, your lid coats your eye with “tears” moistening your eye. If you are not blinking correctly your eye will dry out and your vision will blur. I know it well. Once I learned about that I used artificial tears/lubricating liquid much more often and it helped with the vision. I still have occassional vision problems (mostly when I am tired or after a long day) but a few drops and it clears up. I have had BP twice. The first time I healed by 6 weeks so I know about the quick recovery. The second time left me as a “long-timer” so I still deal with the side effects, which are manageable. Many of the side effects do not seem to be known by doctors and are not listed in general BP descriptions. How about the tingling (mostly in the arm and fingers or the collapsed nostril). I find my information on BP forums with many of us asking questions and finding out that we are having the same experiences. I have learned about the ear whooshing, the blurred vision and the chin dimple all from the BP community. What you are experiencing sounds like what the rest of us experience. I hope that this helps to relieve any fears. It just takes time.
Hi i also recently got bell’s in October just before my birthday!! For a while I was really depressed and upset a lot of times… until recently. I’ve fnally plucked up the courage to venture into acupuncture because my recovery is minimal after 2 months, and my ENT doc actually said I’m never gonna recover. I am real pissed at that. So far, I have had 5 acupuncture treatments and it seems to help. I feel my speech has improved in the space of 1.5 weeks after the acupuncture so I am still going. In a way I am fortunate because I am from Singapore and it is quite convenient to find an acupuncturist.
I have considered acupuncture, but hesitant. I think it scares me to think that it might not help. I am currently having craniosacral massages (recommended for BP sufferers). I do not think that it has helped any other than to give me an hour of peace while I am having the massage. I really should now consider acupuncture. I am at 3 months with little improvement. My ENT did not seem to know too much. I felt like I knew more than he. I do not think that doctors see a lot of BP so do not know all the facts. I have read a lot (especially from other sufferers) and have learned a lot more.
I feel the same way, like I knew more tHan my doctors, or I at least did more research. I have had BP since having my first child in January, so about 19 months now. I have been seeing an acupuncturist for about 6 months, and it has helped me tremendously. Sometimes I wonder if it’s just time passing that has made it better, or if what he is doing is really helping. I think it is a combination, but I certainly was getting tired of sitting around waiting for things to get better. It affected both sides of my face for the first 2 months, and my right side fully recovered on it’s own, my left hasn’t been the same. I was terribly depressed, I couldn’t smile at or sing to my new baby and I wouldn’t leave the house. I was terrified of even making Dr. appointments over the phone because no one could understand me. It was awful. Going to acupuncture helped my outlook, my depression, and the left sidea of my face is about 90% normal. I don’t expet to be exactly the same again, but I’m in a much better place, now.
Good to hear that you have had some positive results and that you are in a much better place. Relax and enjoy the holiday.
Let us know how the accupunture turns out!
I’m week three with bells. whie i have not returned to my nursing job yet due to vision problems, i have been using acupuncture recommended by my dr who practices both eastern and western medicine. I did the prescribed meds an then started acupuncture right away. 3 x a week and its really helping. The needle placement I can’t even feel. Besides the same needle placement is what they do for facial regeneration..lol! I am also using super b complex and a natural herbal anti inflammatory and anti viral. It’s something that can’t hurt so why not. Take care every one.
Jacque,
Sounds like you found one of the few doctors who understands the virus and has set you on a good path to recovery. Very lucky you! Take care.
hi skinneybeenie
can you share with me which acupuncturist did you go? my sister was just diagnosed with BP few days back. It is our first time experiencing BP and we are quite at a loss. Visited the GP thrice and was given some medication.
Please advise. thanks
Hi,we startd wit bp round about the same time,10th aug. The doctors told me nothng will help,i must jst wait it out. For the past 6 weeks ive been doing acupuncture,it helped alot. I cn close my eye completely without effort and im getting my full smile back,although i cnt lift my eyebrow fully,there is movement. I dnt hav 2 put my hand infront of my mouth wen i laugh anymore. I cn tel u acupuncture is realy helping for me. Im stil doing it. Gud luck!
glad you’ve had some good recovery, sounds like we are at about the same place (I haven’t done acupuncture, but have had some good recovery without) Keep checking in and let me know how you are doing 🙂
I was actually just diagnosed with BP yesterday. They said that being pregnant (I am 21 weeks) is a possible cause, not that all, or many, pregnant women experience it. It’s encouraging to see that a variety of people are checking out as much information as possible on this little change. Today is my first day back and work and it has not been easy. I’m a public school teacher. I teach music, so I see a different group of students every 45 minutes all day long. It’s been difficult trying to explain why my mouth looks funny when I talk and why I cover my mouth when I laugh, but hopefully it’ll just turn out to be something they no longer notice. They put me on a steroid treatment and the Gabapentin, but I haven’t noticed anything getting better. The pain is actually a little worse and I am slurring a lot more. I know it hasn’t been long, but it seems as though there is nothing else on my mind. Did you have a difficult time accepting such a change, knowing that it may never go away?
I got BP 23 years ago when I was pregnant with my son and in my third trimester. It started to clear up the very day that he was born! It was a slow process, but started to improve that day. I felt I had a very slight residual after all was said and done, but almost not noticeable. I do understand the emotional and physical trauma of this and want to reassure you all that the chances are very, very good that it WILL go away!!!! You are not alone, there are those of us who understand everything you’re going through, such as eye not blinking, devastating emotional impact, etc. I must say, unfortunately, now I have some weakness on the left side of my face that drs. think may be a mild BP. That’s the same side I had the full-blown BP 23 yrs. ago. God bless and help us all, and we’re all going to be okay!!
I sure hope you’re right, Chris about it going away. I’ve had BP since about October 18th of this year. It also started up with me not being
able to drink normally from a water bottle. I suspected that something was wrong with my mouth, so I looked in the mirror. What I seen in the mirror was a drooped left side of mouth, and a drooped upper lid on
my left side. I also had a bad headache coming from the left side back of my head, and my left inner ear was hurting….
Hi would like to give you my .02 cents worth. I have suffered through 3 serious bouts of BP, all 100% paralysis. Twice on the left side, once on the right.
1st bout-left side in 1979, corticosteroids and e-stim, approx. 95% recovery
2nd bout-left side in1996, no drugs as I acquired an allergy to them. No manipulations other than self exercises, approx 80% recovery.
3rd bout-right side in 2005, no drugs, cranial sacral massage (only helped with the migraines I was having) self exercise, 60% recovery.
Now we think I’ve had a ‘minor’ bout with it sometime in December or January because all of a sudden my face became extremely weak, but not completely paralyzed. A lot of stiffness around the mouth, especially on the right side. (to the point I could not give the small smile I had, NOR say anything with the letter “M” in it, my mouth would stick)
Trying acupuncture this time. So far I’ve had 3 treatments, major bruising at two sites, BUT, the stiffness around my mouth has slackened. It’s not 100% and I truly don’t expect to get the whole face back, but if I can get the muscles to loosen enough that I’m not struggling I will be happy!
Jan,
Sorry to hear about your experiences. It shows that each occurrence is different for each person and different each time. What we all have in common is knowing what it is like. My bad letters have been B, P and F, with F being the worst. I was happy to report to friends and family this past month that I can finally say F words again, although I feel the effort each and every time. I have been nervous about acupuncture, but think that it may help. Other BP sufferers swear by its positive effects. I love the craniosacral and, though it might not be helping with facial recovery, it relaxes me and helps with any anxiousness that may hinder the progress. Wishing you a full and speedy recovery
Have now had 13 acupuncture treatments along with 2 e-stim treatments over the past month, I am happy to report that the stiffness has eased considerably. My smile is still crooked, still not 100%, BUT I can smile again! My hubby is happy as I can pucker again for a kiss! He said it had been quite some time since that has happened!
Not expecting 100% since my ‘damage’ has been done over a long period of time, but IF I were to talk to a ‘new’ patient of BP, I would suggest acupuncture!
I have bp,I’m in therpy had it over a week.the neck pain is severe at night mostly can’t sleep. What can I take for pain,Motrom,aleve,advil,tylonol don’t help at all .I can hardly take this any more heat pack don’t help,cold packs help a little please someone get back with me thanks
Carol, hang in there, the pain does go away. Heat, especially moist heat is the way to go. Stay away from the cold if you can. I found hot baths with my face partially submerged helped a lot in the beginning. I hope you are feeling better soon. Keep in touch.
Vickie
Hi!
I’m soooo glad I found your blog today. I was just diagnosed 1 week and 1 day ago. So I’m feeling nothing short of insanely miserable! Please tell me this gets easier?!?!
Rachael,
So sorry you have joined our little club….but things do get better. I am sending good thoughts and prayers for you to be a speedy healer! Keep in touch 🙂
Vickie
Vickie, How are you? Any new progress? Most people still have no idea (much to my surprise) that I still have paralysis and yet I know everytime I speak a word. I get craniosacral therapy once a week and my therapist can feel the tightness in my muscles that no longer work right. You are my only longtimer link and, hopefully, you are better and further along from when you last posted. Jami
I ‘ve just received BP on Dec 27,2012 it washysterical never seen anything like it in my 37yrs in ths world.I’m very much frustrated and don’t knowwhat to do no longer have insurance due to losing my job.what can a women like me do.I pray for anyone who may be going threw this it’s not fun all i can tell you is pray.I glad it wasn’t a stroke.it could have been worst.
Rachael, It does get easier. You have to stay calm and rest. I wish that I had found this blog when I first got BP. Talking to others will help. Take care. Jami
Jami,
I’m doing okay. Still do not have complete recovery. I think I may be done getting any better. I hate looking at pictures of myself because most of them show the uneveness, but other than that on a daily basis I “forget” I have it. Most people don’t notice until I point it out. But I see it pretty clearly. I just need to stop looking in the mirror and I will be fine, lol. It’s just added one more dimension to the joys of getting older 🙂
Vickie
Vickie, I understand exactly what you are going through, it is my experience, as well. I am sorry to hear that you continue to have problems, but feel a bit better knowing that I am not alone. Take care, Jami
Vickie, you don’t have to be old to have BP. It can happen at any age.I know of someone that had it that was only 7 years old, and someone else that had it at 12 years old…
Yes, I realize this. Although statistically speaking it is way more common in middle age and up. But thanks?
No, you do not have to be old to get BP. Although it can occur in those young and old, it is not as common for that to happen in those age groups.
Hello, 10 days into BP after being the sickest I have ever been in my life due to a campylobacter bacteria food poisoning from a organic farm. 37yo, helicopter pilot and military airplane pilot. Great shape and healthy eater. Pretty ironic that 3 days after being extremely sick I get BP. Outta work because my eye won’t blink. Currently my face does not move on my right side at all. I can blink if I try but not all the way. The first 72 hours my face looked lifeless and now it is just about symmetrical. I can drink through a straw and eat fine. And I can talk normally. Besides a couple letters. B’s and F’s are a little off.
I now have this pain in my neck that’s very soar and my face muscles feel like I took a couple punches when I do my face exercises.
I just got my first acupuncture session today and took my last steroid. I have a few days of the anti viral left. Been to ER twice, family/flight doctor, neurologist and VA hospital to make sure I covered all my bases. They say 80% wi a month but, well see. Hoping for some results every morning.
I see some people have gotten it more than once. I am so very sorry. This is not fun. I am no great example because I have it but check your diet. Stay away from the comfort foods, ie lunch meats, fast foods and anything with an ingredient you can’t pronounce. This also includes liquid soaps, shampoos, perfumes etc. all those chemicals you can’t pronounce gets into your bloodstream. For god sakes take your vitamins and minerals. Should be 180 total. Preferably liquid. Ok that’s my 2 cents. hope this helped and good luck everyone.
You posted on February 10 so, hopefully, you are much better, if not totally recovered by now. Average recovery is 6 weeks and, from your The serious bout with the food poisoning may have been your trigger. Doctors have told me that stress, illness, even flu shots can be triggers. My first time with BP I was terribly stressed and the second time I had a terrible cold. Trying to keep sane, healthy and stress free is helpful. I also have the added disadvantage of having a genetic pre-disposition to the virus. Studies are now showing that it does seem to run in families. I am the fourth one (that I know of) to have BP. Hope you are feeling much better. Jami
interesting what you said about flu shots being a trigger to BP. my wife’s Dr swears it couldnt happen but we’ve always thought it was the trigger for hers as she had a reaction and had bad hives too!
I do not know the flu shot is a trigger, but the doctor that I saw for my second bout of BP seemed the most knowledgeable of any doctor that I saw and she told me that so I listened. I would rather not take the risk of the shot being a trigger.
I HAVE LEARNED MORE HERE AND ON YOUTUBE THAN I LEARNED FROM ANY DOCTOR. THEY DO NOT KNOW ANYTHING ABOUT BELLS AND THEY GIVE PAT ANSWERS THAT DONT HELP AT ALL. IT MAKES US FEEL CONFUSED, FRIGHTENED AND HELPLESS. I DONT KNOW WHY THEY DONT KNOW ANYTHING UNLESS THE ONLY WAY TO KNOW ABOUT BELLS IT TO HAVE IT. NO ONE TOLD ME ABOUT THE HORRIBLE PAIN. THE WORST PAIN I HAVE EVERY HAD. I WOULD RATHER HAVE ANTOHER BABY. AT LEAST AT THE END, YOU GET A BABY. THE ONLY RELIEF I GOT WAS FROM BEING PERFETLY STILL. THE CLOSEST THING TO BELLS PAIN WOULD BE SCIATIC PAIN. IT IS THE SAME INTENSE NERVE PAIN THAT IS ONLY TOLERABLE IF YOU DONT MOVE AT ALL. SLEEPING WAS ALMOST IMPOSSIBLE. MY EYE IS NO LONGER DRY BUT WHEN I CHEW ON THE RIGHT SIDE OF MY MOUTH, MY RIGHT EYE BLINKS. I DONT EVEN CARE AS LONG AS IT DOESNT HURT. I AM SO OVER WHAT I LOOK LIKE WITH BELLS. OH AND WHEN I CLOSE MY RIGHT EYE, THE RIGHT SIDE OF MY MOUTH TURNS UP LIKE A SMILE. WELCOME TO THE CRAZY WORLD OF BELLS PALSY. THIS IS THE ONLY PLACE WHERE YOU WILL HEAR THE WHOLE TRUTH.
Ah, yes, the synkinesis, that plagues us longtimers. I hate that my eye and mouth do not work independently of one another. That seems to be one of the biggest complaints from those of us who never healed entirely. I do not want to concern anyone who is new to this because most everyone will get better and it will be a past memory. Unfortunately, there are those of us who have not healed entirely (and will not) and we are left with side effects that you have to learn either from your own research or from those who have experienced it. I believe that doctors do not know that much about BP because so many of us think that we are having a stroke and take ourselves to the emergency room right away instead of our primary physicians. The ER doctors are much more knowledgeable because they are the ones who see and tend to us.
People who have never had this just dont get it. Its like “oh you only have bells palsy” Yes it could be most definitely be worse. But there are things people dont see, the pain, headaches, dizziness, tiredness. Its been 3 days for me, and I feel like im in hell. The paralysis finally hit my forehead, which I didnt have at first. Dr was very concerned about that. I keep checking the mirror for some change, nothing yet. Im just exhausted and trying to stay calm and relax. Just moved to a new place with no friends or family close for support. Glad to have found this blog with others in my shoes.
Three days into BP is very early. You may not see the first signs of movement for a couple of weeks yet. The pain can be bad and a painkiller to help you sleep through the night is suggested if the pain is not tolerable. Soon you may also experience the feeling like you were just hit in the face by a baseball bat. Although BP is not uncommon, doctors do not see a lot of it so they do not know a lot about the symptoms and side effects. I find that you have to rely on other “sufferers” for that. Try to stay calm, rest, protect your eye (especially at night), warm moist heat for the pain and soreness and recovery will come – although it may not seem soon enough for you. It will come!
Just not knowing whats normal and what isnt. Im so tired, is that to be expected? My Dr appt isnt til next tuesday the 13th.
Yes, being tired is normal. The following website helped me immensely. It talks about symptoms and side effects that are not discussed on other sites with general information. The information is devoted solely to BP and you will recognize a lot of the symptoms, even though you may not have realized that what was happening was part of the virus. http://bellspalsy.ws/
I am on Day 11. Just got back from a neurology appt. He said that my condition is typical BP except for the pain. But I see the pain IS typical. My neck hurts, can’t get comfortable at night. It is comforting to see that others do have the same symptoms. So maybe the MRI isn’t necessary after all.
yes, the pain has been normal for tons of people I have talked to. Mine was so bad I ended up on pretty strong meds for a time :). Hang in there!
You know, i as well joined the other 40,000 affected annually about 2 weeks ago, im begining to get some movement back, but not much. I was begining to grow concerned with the soreness and or aches ive now been dealing with thinking it was a bigger problem. but i mean as you put it best “slept-the-wrong-way-on-too-many-pillows and not-my-fault-car-accident-whiplash” is exactly what it feels like. its just uncomforting. I am glad to know that I am not alone in this weird neck pain-sorness-achy feeling. Thanks
this blog made me feel a lot better about my neck pain, but after reading your post, im starting to think that feeling of getting hit in the face with a bat is on its way! lol still no feeling in my cheek, still cant smile. my BP ear is still sensitive to loud noises. and of course my eye is always watering. but I use eye drops often, and tape my eye shut at night and use an eye patch. its best to stay positive with this condition, there is no sense in getting all railed up about it, because yes, it could be worse. But at the same time. its annoyying As HELLL. its always there, and just when you are about to forget, you laugh, or smile, or pronounce something funny. the jokes get old quick. popeye, pirate… On the upside. you get to wear an eye patch. how often can you honestly get away with wearing an eye patch? thanks again for this blog. its good to know im not the only one who is dealing with complications and or soreness-achyness in the recovery process.
My Opthamologist told me not to use a patch, or a mask, because it
will dry out your eye too much. Instead, he told me to put a piece of
Sarah Wrap over my affected eye, and secure it with pieces of tape.
That is the first time that I have heard of NOT using a patch. Our eyes will dry out, not due to wearing a patch, but because we do not tear correctly. Whatever method you choose it is important to 1) always cover your eye at night to protect it until it can close and stay close and 2) put lubricating drops in your eye. The drops are what will keep your eye moist until you recover. You should always have the drops with you and use it whenever needed.
I am now on Day 38. Not much pain anymore. I can think clearly again, thank goodness. But still no movement. I did go through 2 neuroligist appointments, a CT scan and an MRI. Cancelled the eye doctor and ENT appointments. I have spoken with 2 medical professionals that I know on a personal (not professional) level and theyhave told me that it can take 3-6 months to recover and not to worry. I really want my face back.
Eileen, I did not start to have any movement until 3 1/2 months. Waiting can be the hardest part. It will come.
Jami, I finally have a little movement – at the same mile marker as you – 3-1/2 months. Day 105 to be exact, which was July 29th. I have just a little bit of controllable movement next to my mouth. I can smile a little bit on this side. Also a tiny bit of movement at my cheekbone in the last couple of days. Finally. Hurray!!! And I am slowly getting my energy and my brain back. Did anyone else have trouble thinking clearly? I feel as if my brain has been at about 70%.
Did you do facial exercises when things started to work again?
Anything else I should do?
Eileen
Eileen, So happy to hear that you finally have movement!!! The little movement at the side of the mouth is where mine started (both times). How excited were you? I am excited for you. I did not do any regular exercises, although I was (and continue to have) craniosacral massages with extra time spent on facial massage on the effected areas. I found an exercise for “longtimers” to help regain some movement and I did that for a time…..it hurt. What I do find myself doing now is trying to open my mouth as wide as I can and try to form a symmetrical opening of my mouth. A part of my face remains “stuck” (even though most people do not realize it) so my mouth does not open all the way properly. I am not sure if that, or anything helps, but I feel better for trying. Hope to hear from you soon that you have all your movement back. Take care.
Eileen you asked if anyone else has trouble thinking. Thinking is a nightmare! I’ve even changed my supermarket to the small local one to avoid a sensory overload! How bizarre. I’m a school Principal so my job requires thinking most of the day. I’m in week 3 of Bells and wonder what returning to work will be like? Yes, thinking is stressful. Your not alone with that one.
Hi Donald – How did returning to work go for you? I hope it wasn’t too difficult. I never took any time off and wonder if that was a mistake. I can think much better now so would like to let you know that that part does get better. Do you have any movement yet? Eileen
I got BP when I was 17 in high school for only about 1 month (although nobody including me seems to remember for exactly how long since that was 15 years ago). When I was pregnant (in my 8th month to be exact) I developed BP again. I couldn’t take anything or do anything because of the baby growing inside of me…so the fact that I didn’t try anything right away probably didn’t help recover. Everyone convinced me that the steroids wouldn’t hurt the baby so I did that about 1 month after getting BP. Then once the baby was born and I stopped breastfeeding (only did that for about 2 1/2 months) I tried physical therapy with electro-stimulation. I tried this in high school and I thought it helped…however I tried it right away. I saw improved and had some movement but stopped going once it slowed down (it was expensive and everyone was helping out). Then I decided a few months later to try acupuncture with electro-stimulation and heat. He was giving me some Chinese herbal pills (60 a day) and I saw him about 3x a week for 2 weeks (total of 7 times). I started getting migraine headaches every day and he just blamed it on stress from work. However, when I stopped going and stopped taking the pills, the migraines also stopped. I saw no improvement with it either. I saw a neurologist in the beginning but she just said that since it wasn’t on the same side of my face as in high school, it wasn’t a neurological thing. I didn’t do the facial exercises as much as I should have and don’t do them at all anymore. I just figured that I move my face every day talking and drinking and eating so isn’t that the same thing. Pushing my face up in places using my fingers isn’t helping my muscles or nerves. My fingers are doing the work for the muscles so why would that tell them to start working? And the nerves are deep down where me pushing my face around isn’t getting anywhere near the nerve. They say it’s a viral disease from the herpe complex. My sister in law said she heard someone saw improvement from taking Valtrex but my brother, the doctor, said it probably won’t help. I take B-12 vitamins but no improvement. My husband recently heard that if you put your vitamins in a glass of water to see how quickly (if at all) they dissolve, that will tell you if they are working and the B-12 didn’t dissolve at all. I got a B-12 shot through his work and that didn’t do anything. I’m going to try doing more next month because one time doesn’t always do the trick. It’s been almost 15 months now and I’m really discouraged that it’s going to be getting any better or going away. My only hope is that I can still feel a tiny bit of soreness when I push on spots on that side and that because I was pregnant, some people/doctors say it takes a whole 2 years for your body to go back to normal after a pregnancy.
7 days in. Just starting to feel face and neck pain. The paralysis is frustrating. I have to opt out of teaching classes this summer- the thought of trying to talk for long periods of time is daunting. Thanks for your stories- waiting is terrible.
7 days in for me too. had minimal pain day of onset under my left ear, then the pain was gone and numbness set in. Yesterday day 6 at work the face pain really kicked in omg feels like im being punched with a bat that was set on fire before the beetings began, called pcp and they increased my steroids and then prescribed acyclovir. Im insane on the steroids and just sit here and cry because it hurts so bad. pain is whole left side of face,and neck. no blink yet it sucks, eye ball hurts from manually blinking. no smile for a week is really hurting my ego too. these replys were very comforting knowing im not the only one expirencing severe pain as doctors seem to think this is painless for everyone.
Lynn, Oh yes, the baseball bat! I remember it well Have you tried a moist heating pad? It really helps to get through the pain. It can be soothing. My first time with BP my doctor did not see the need for pain killers and prescribed alternating doses of Advil and Tylenol. That did not help. My second time with BP I immediately asked (a different doctor) for mild painkillers to help with the pain so that I could sleep. Definitely a help. There are many BP sufferers who will confirm that this is NOT painless. Feel better soon. Try the moist heat.
Definately not painless. My BP hit in Dec2011 and took about 4 weeks until I regained virtually full use of my face. The pain hit at about 2 weeks and unfortunately remains to this day. I take 8 co codomol a day which takes the edge off the constant neck pain, but get sick of people saying “at least you have your face back”. Yes, i do appreciate it, but really could do without the pain now. Sometimes the pain brings me to my knees.
Enough.!!
Its reassuring to read all the comments for this weird illness. Ive had Bell’s for 3 weeks now with little change. Some okay days and others where I just don’t feel like moving. Still a lot of paib and thinking can be very exhausting. Has anyone tried bee venom and honey? I’ve been advised it might help.
I tried Manuka Honey but unfortunately, maybe cos I was so low, I had an allergic reaction. Both sides of my face were swollen. But that’s just me!!
I came down with Bell’s 13 days ago while having an earache treated at the emergency room. By the time I left the hospital my left side was completely paralyzed. For the past year I have been taking 2,000 mg of B12 daily, to boost my memory, and I continued taking the B12 after the Bell’s attack. I was put on Prednisone and Acyclovir within one hour of the first BP systems. On the morning of the 8th day with Bell’s I was beginning to think this was going to be a permanent affliction and I was for the first time felling trapped and depressed and almost like “The man in the iron mask”. A few hours later, while driving my car, I felt a twitch over my left eye and on my cheek and a powerful tingling feeling all over my face that felt like a thousand little fingers tickling me at the same time. I knew then that my recovery had begun. I still have intense pain where the 7th cranial nerve splits off but Oxycontin gives me the relief I need for that. The great news is that after only 13 days, I have a 95% recovery of all my facial functions. Even my closest friends, had they not already been informed, would never suspect that I ever had Bell’s. I believe that the high doses of B12 and the Prednisone from the onset, played a significant role in my early recovery. I would highly recommend to all sufferers of Bell’s, high doses of B12. You have nothing to lose and possibly an early recovery from Bell’s, to gain. I’m living proof that recovery can be swift. I went from total paralysis to recover in just five days. God bless you all.
It’s good to hear all the statements from everyone with essentially the same issues I have. The pain is worse for me at night, but I started using a microwaveable bag of cherry pits that my wife had. Produces a very even heat and seems to help. 2 weeks in and I have some minor improvement in my eye and mouth. Still slurring like I’m drunk, but manageable. I own a small business so I don’t have the luxury of missing work. It’s a pain to have to tell my customers what’s wrong every time, but maybe I’m getting sympathy sales! Ready to be done, but still happy for the most part.
I was prescribed Amitriptylene 10mg to be taken at night. Really Really sugest you all try this. Taken so much of the pain away.
I’ve suffered from depression, panic attacks and PTSD for 39 years now. I have so many adverse affects to meds that it makes things difficult. I won’t get into other plain odd things that happen to me that have never been heard of and have had enough surgery at age 39. To top all this fun off, I wake up with Bell’s 5 days ago. My birthiday is next month and I knew something would happen by my 40th. It seems mild right now after everything I’ve read. I’m already getting some movement back but my main concern is the increasing pain in my neck up to my ear and under the cheekbone. I’m continuing to take Ibruprofen but I’m afraid the pain will get worse. Where I can’t take many meds because of terrible side effects, I really need to get this out. I’m pretty much alone with this myself. I’m not feeling sorry for myself. I just need to talk with people. I’m so glad I found this. Thank you and I have half of a smile for all here 🙂
aw sweetie! hang in there, sounds like you have a mild case…but that doesn’t make it any easier. moist heat helps with the pain. take care of yourself!
You could try a heat pad on neck pain. It helped me.. even if I only fooled myself. It felt good anyway. Try it. The type you put in the microwave is best, I found.
Thank you Vickie. I need to find a hydroculator. Remember them?
Vickie is right. Sounds mild and you should be recovered shortly. You can get through it without painkillers (I did the first time). The pain does not continue to get worse. Again, I agree with Vickie about that the moist heat. Definitely helps! Take care.
Hi I got bp 2 weeks ago I feel like someone punched me in my face I can cope with been sore but it’s the pain in my neck going from the back of my ear to my collarbone can anyone help x
Finally, a place that understands and encourages me that it will all get better. This is my second time with BP. The first was so much worse. Lost the use of the right side of my face. The medication they gave me just made me want to eat all the time, which is the total opposite of me normally. Slurred speech and lots of mushy foods and all that.
This time, it is the pain. So much pain. All the way from my eyebrow to ear and the jaw. Feels like someone hit me with a cricket bat. It’s on the right side again and is really only affecting my eye, but it’s the pain. I’m constantly having to hold my jaw up, very tenderly. Now it’s the outside that is hurting and my eye is watering again. Still doesn’t close fully and I actually feel worse now than when it first returned nine weeks ago. The pain also goes down my neck and shoulder, back and arm.
I thought at first that the pain was a good sign, meaning recovery, but now I’m not so sure.
So sick of the pain.
Just for interests sake, I am 48. My first BP I got was 12 months ago. And now it’s back.
Any helpful advice or sympathy appreciated since my husband is not very understanding.
My first BP occurrence was when I was 48 and 19 months later I got it again (on the opposite side). I know the pain well. The baseball bat across the face. The jaw pain. Oh, yes! I used a moist heating pad (the microwave kind) on my face and only took prescribed pain killers at night to help me sleep. During the day I took alternating doses of Tylenol and Motrin. Not sure how much that helped, but I was determined to get through the day (and work) without painkillers.
I assure you (as we all can) that the pain does go away. I think that the jaw pain takes the longest (it did for me both times), but it really does disappear and eating mushy food will soon be a nightmare in the past.
I’m sorry that some of you are suffering like I am with neck pain but with that being said it is comforting to know I am NOT crazy. I developed BP in May and had it until August…then came the neck pain on the same side. I was diagnosed with Occipital Neuralgia and have tried everything from PT to massage – to nerve block injections in the head and neck – and even chriropractic. Nothing has helped. I really believe the root of all this is the BP. I hope it leaves some day!!!! I lay in bed at night so uncomfortable and pray it will go away. My eye and cheek still aren’t right. They still twitch and it’s been over 6 months. Do you think I’ll get better.
I think it is too early to tell whether you will have lasting problems with your eye and cheek. I have never fully recovered, but it took months and months for me to see ANY improvement at all. I hope your pain gets better soon, I hate for anyone to suffer with this. Keep in touch and let us know how you are doing!
Vic
Vickie is right. It is too early to tell. I have also never fully recovered and it took months before I began to see any improvements. I do have some setbacks with some pain and discomfort, but that does not happen often. Give it time. Try to relax. Stressing will only make it worse. Take care.
Thank you so much for your reply. I will keep you posted.
Hi, i have been fighting with BP for six months on and off now. I first got in june. Went to my dr who just kind of brushed it off even though i was in such severe pain all i could do was lay in bed and cry. I was worried because mine only affected the lower right portion of my face, from my cheek down. I went to the E.R. dying in pain. They did a CT checking for stroke which was negative. So they gave me a shot of morphine and told me to go home. A weel later i saw another dr who finally gave me pain meds and sent me immediately to an ENT. There three different drs looked at me and my CT from the E.R. they swore i had a stroke but couldnt find it. I got more pain meds, antibiotics and aniviral meds. After a month and a half i was recovered, but i could sneeze and my face would go paralized for a few minutes. Anyway it has continued to come and go ever since. For the past month the lymph nodes in the right side of my neck have been very painful. Two days ago the BP came back. I really wish the dr could figure out why i have it so much. This is getting old. My gramdmother inlaw was also hospitolized just before christmas with it and they told her it was a sign of something more serious. Well they just found she has stage 4 lung cancer. So yeah, im sure you can imagine my worry.
Becky,
BP affects everyone a bit differently and there is no time limit to its end. The pain can be tough. It is good that the doctors ruled out a stroke and, hopefully, ruled out other causes. If the virus was brought on by Lyme Disease (which is quite common) then you may need a different course of action and it might explain why it keeps coming back. Were you checked for Lyme? Wishing you a well soon.
Here I am again.
For the last two nights and part of today, so far, I have had the eye twitching and spasms. To the point, it felt like my face, the right side, was having a seizure. It felt totally worn out after, a bit like it had been through a marathon.
And apart from the twitching and spasms, my right side also gets swollen and puffy. Even my husband noticed and he didn’t even notice when I had 30 cm of my hair cut off, so it was very obvious.
As usual the pain is still there and again it has caused me to produce too much saliva and affect my sense of taste and smell.
When my face is swollen, you can feel the heat of it. Very hot.
Is this all still normal?
No where I have looked mentions any of this.
Not that any of the symptoms/side effects seem “normal”; however, all of what you describe have shown up along the my road to recovery…..especially the facial swelling.
Thanks again Jami. It just seems so strange and no one else has mentioned it, I was starting to stress again. Sorry to hear you have had to endure this but I’m glad I’m not the only one.
Can I just say how reassuring all the posts are on here. I am 2 weeks into this and I find knowing that others are finding it tough is a huge consolation. I am not a vain person but there is something so distressing about not being able to smile without seeing the look of shock on anothers face.
I too have face pain that is pretty sore – a loop round my eye and behind and into my ear. Just when I pinpoint which bit hurts most, it`s somewhere else. It is stressful in itself and I`m sure keeping calm and chilled is the way out of this. Now, I would be reassured if I thought that this was a good sign, a possibility that a change was coming, but it seems to me that this was where I started and it eased initially when the paralysis came.
Good luck all, keep positive..
Alice
Thank you so much for your site. I have had bp for a week now and the neck pain, shoulder pain and the total soreness in my face just started last night. I feel like crap today but actually was so relieved when I saw your post and realized it was normal to feel this … I was afraid some other crazy stuff was starting…
My 22 year old daughter woke up with Bell’s palsy early December 2012 while on a relaxing week at the beach. She was on a break from a stressful job where one day she flared up with a bad nerve rash leaving her rashy and burning red hot on both arms. She copped every loss of movement from eyebrow to gag reflex in her throat. She got her first hint of movement on New Year’s Day with eyebrow and mouth ever so slight. It has been almost 8 weeks and every day is exciting to see what movement there is. Her smile is returning, gag reflex is returning no blink yet though. Apart from cortisone and anti viral medication early she has been taking big quantities of b12 under the tongue and swisse brand chlorella and spirulina. Her first movement was 3 days after taking good doses of these natural tablets. Chlorella has studies confirming nerve regeneration so we are putting faith in the greens has to big doses though. My girl has amazed me with her handling of bells. She wears an eye patch everywhere and at night. She has a black one covered in jewels for going out at night and put an Aussie flag on a beige one for Australia Day.
Sounds like she is right on track toward recovery. Best wishes! P.S. The blink does take awhile.
Thanks Jami My daughter was talking to a customer of her gym who is a nurse and he had looked after 6 people with BP for December/January at our local Emergency Hospital. Must be something in the water in our town. Could be a connection to the sun and cold sore virus as its been a very hot summer. Her blink is really firing so I’m hoping it will be soon. I hope you get full recovery fingers crossed for everyone.
Im 29 weeks pregnant. I was diagnosed on January 4th with an ear infection, and one week later on January 12th, I woke up with full BP in the right side of my face. Of course being preggo I was sure Id had a stroke. While I am very grateful I did not, this is no fun either! I took the prednisone and antivirals with no change (which I know is common after reading A LOT!!) I am amazed at the lack of knowledge all the Doctors ive talked to have on the subject. I am doing chiropractic care to help alleviate the pressure and it does help, slow of course, but the pain has been reduced greatly from 2 weeks of seeing her. I also feel as I have been beat by a bat in my sleep but that seems to be getting a little easier as well. Strange as it is, in week 2, I had regained some closure of my eyelid and could almost not tape at night, but that decided to go away again too! I am so frustrated on this road and happy to find a blog like this and see how many others are going through exactly the same thing. I no longer cry about it (because all it did was hurt my eye more and irritate me more), instead I try to just pretend its all fine and go on with life. Hoping this subsides before delivery, but if not, oh well!
Kristen,
Very true that doctors do not seem to have much information for us, which is why we have to help each other. Your symptoms will subside. It just takes time. You have to keep calm and be patient…tough as that can be. You will get better.
Well after a very frustrating “re-evaluation” today, I’m being sent back to a Neuro and an ophthalmologist. They are concerned about my eye of course but I think the neuro appt is a waste of time. My Dr was very nice but felt I should have some movement by now even though I know everyone is different. I think it just depressed me more than anything that he thinks there’s no hope. I do everything I can to keep some hope and then someone comes and stomps on it today. Ready to climb in a hole and hide today. Oh and get this, ophthalmology said the soonest they’d see me was in April HAHA! My Dr had to call them and explain I haven’t blinked in a month and he’s concerned for abrasions and wants it looked at, I now am in for 10 am tomorrow! Just goes to show how little people know about this!
Kristen,
I did not blink for almost 4 months. My brother had BP and it took him almost 3 months before he blinked. The blink takes the longest. Both my brother and I blink now. It took a while, but it came back. You need to make sure that you protect your eye. Keep it patched at night to make certain that nothing will scratch your cornea, keep it moist with artificial tears or lubricating drops and, if you read Vickie’s early posts, make sure to wear sunglasses to keep bugs out of your eyes (so funny, so true).
I have been doing the eye drops, ointments plus taping at night, sunglasses and regular glasses all day. He just wants me to see them to be safe! I know it will take time and I have plenty of that, I’m just annoyed today is all. How dare someone who has never experienced it tell me there should be more improvement and that it could be permanent. It’s unlikely it is, but I hate when people tell me it “could” be. I’m aware of the statistics! I personally just think a neuro consult at this point is going to make no difference. I’ve done the meds, now it’s all just time!
When I got BP the second time and went back to the ENT specialist (one of the top rated in my area) he was shocked that, not only did I have it a second time, but that it was on the opposite side. That was when it became so clear to me how little the doctors know. E.R. doctors seem to be on the ball because they are the ones who see it most. The others doctors seem to provide little help or comfort. Take deep breath.
Well my day got brighter. My husband got me French silk pie so preggo is going home to relax, eat pie, and start fresh again tomorrow lol! 🙂 thank you for talking to me, you guys are my support right now and I appreciate that! 🙂
I wish I had had everyone when I first got BP. It would have helped a lot. Enjoy the pie!
It’s a mystery for sure this B P depending on tiredness seems some days are better than others. I wonder if the diagnosis of ear infection was a bit of a mistake it seems the pain in the ear can come before and after. My daughter is 8 weeks into BP and last night had bad ear pain and I thought she didn’t look as good today. Best wishes for bubs arrival Kristen.
Tracy,
Possible that the ear infection was nerve pain from the onset of BP. There are symptoms before BP “strikes;” however, the symptoms seem so common that we are not aware of what is happening. Since doctors do not see that much of it and do not seem to know as much as we eventually learn, an ear infection diagnosis seems plausible.
There can be days that are not as good. It happens. We have had nerve damage and it takes time to heal. I definitely notice a difference when I am tired.
Yesterday I was given an eyelid weight. Absolutely the best thing thats happened to me since my diagnosis. I have been able to blink my eye now for 2 days! What a wonderful feeling that has been. I have an external one, but I go in a month to consult about an implant until things are looking better 🙂 If you have BP and have not been told about them, check with an opthomologist! So much relief in 2 days!
I admit that I have never heard of that. Good to hear that it has been a relief to you.
Its a tiny little flesh colored weight that I attach with double sided adhesive. It doesnt keep my eye closed but it allows my eye to blink with gravity!
My ENT offered a weight but it was a gold implant. I would have loved to try the temporary one. I couldn’t blink for 6-1/2 months.
Since my ENT was shocked that I had BP a second time I would hardly expect him to know about an eyelid weight. I blink now, but I still have trouble closing my eye fully on its own. It would have been nice to know about the weight for my non-blink months.
My opthomologist has had more advice and knowledge than any dr I have seen! I am going with an implant if I’m not better in a month! It’s a little odd to get used to and a bit hard to put on, but I can handle those minor issues considering I can see clearly for the first time in a month and my eye strain seems to be going away. I had cornered the market on Tylenol from the headaches. Lol! Definitely look into it even if you are improving, i was also told it might help that nerve want to work if it starts blinking with help. The eye has been the biggest annoyance for me out of all my symptoms. I still Tape at night to be sure I don’t scratch my eye!
Thank you for the information. I remember living off of a giant bottle of Tylenol.
I have had Bells for over 2 weeks now after going to the Doctors with what I thought was an eye infection and leaving with 10 days of Steroids and an eye gel.
I seem to have been lucky with my face as within two weeks I had most of my facial movements back except being able to whistle, raise my eyebrow and drink with a straw but other than that I think I look the same. What I am suffering with is the pain it is horrific.
This site has been very reassuring as the Doctor keeps telling me that you do not have any pain with Bells and I feel like ive been punched in the face under the cheekbone and my neck and shoulders have been very stiff like ive got whiplash. I have been taking nurofen which does take the edge off the pain but I can really only take them for 2 weeks. The lack of being able to know when you will feel better is the worest part of having bells for me and the general lack of knowledge at my GP’s has left me feeling like im on my own.
I do feel like I have also lost brain power and have struggled with vocabulary and concentration. I will need to return to work next week and actually I think that is a good thing as long as take it easy.
Nina,
It sounds like you have not had a terrible case of BP and that you are well on your way to a speedy recovery. If you have read the past posts you will see, as we all have, that doctors seem to know very little and we have to get our information from each other. The pain, the baseball bat to the face pain, the stiffness in the neck and shoulders, all part of BP that only we seem to know about.
Not working may be good because, at first, BP can be exhausting. My ENT did give me one good piece of advice. He said that I could feel miserable at home or miserable at work and at work at least I had something to keep me occupied. The extra rest at home would have been nice, but the distraction at work did help.
Do try to relax, rest and not be stressed. Stress is the enemy.
Take care.
Does the pain in the neck area feel like the glands are ready to explode?
The pain can be a bit different for everyone, although in the same general areas. One of the side effects is a stiffening of the muscles, which can run from your neck into your shoulders and down your arm. It was terrible for me. That may be what you are experiencing.
First off- Thank you to everyone who has posted on this sight before! This has given me more information about BP than I have gotten anywhere else. I got BP 10 days ago, had a doctor check me out and I had a CT scan {normal} done. I do not have insurance, and I do not want to waste a bunch of money for them to tell me that there is nothing they can do. I do have 100% paralysis on the right side of face, was given acyclovir for 5 days, and not much has changed. The doctor recommended me to a neurologist, which is the decision that I have to make now. I know pros and cons, but has anyone had big changes from going to Neurologist? Time seems to be the big healer in this.
Thank You All! God Bless!
no changes from going to a neurologist, just more of the same….but make sure someone puts you on prednisone to decrease swelling around the nerve 🙂 the sooner the better 🙂 sorry this has hit you, best wishes for a speedy recovery 🙂
Steve,
I agree with Vickie. Not much a neurologist can do and you should have been put on prednisone within the first 48 hours for the swelling. I am not sure that any of the medicine that is given per protocol (anti-viral and steriods) really helps; however, treating the symptoms to make you more comfortable is highly recommended. Take care.
Vickie,
I think that you are at your 2½ years Bellsiversary. Any change? I am one month behind you and there has been nothing (that I can detect) that has changed in about 1½ years. Each day is my new normal.
yes two and a half years now and no changes….have a blink, can smile, but it is lopsided….eye still closes a bit when I smile….it’s worse when I’m tired (which seems like all the time lately)….most people don’t seem to notice, but it shows a lot in pictures….I think I’m at my new normal too.
Sounds exactly the same for me. No one seems to know except me. My mouth still gets numb. I hate that the bottom part of my face is stuck so I can feel the effort made with every word that speak. I can wiggle my eyebrow, ear and nose only on the good side BUT on the bad side I have the forehead of a twenty year old (no lines). One way to be positive. Take care.
Jami and Vickie,
Saturday (2/16) was my 10 month mark. I feel like I am in the same place as you two are. It is so nice to be able to close my eye but I really miss being able to whistle, smile, pucker, frown and raise my eyebrows. Oh and don’t forget snarl. 🙂 I am going to try to be better about doing some exercises and hope that I will still see some improvement. Thanks to everyone for their comments. It helps to know how this affects others.
Steve,
The neuroligist didn’t help me either. Just ordered an MRI on top of the CT (still paying for those even with insurance). I hope you are one of the lucky ones that resolves quickly and completely!
Thank you Eileen. As much as I wish you were not like us, it is nice to have someone else understand. Wishing you well and more progress.
i’m so glad i read this blog. i’m a week and a half into by bells and have the worse ear and neck pain off an on. i thought now what is this–so reassured that it may be normal. thanks to all. i just hope this ends soon!
Debbie,
All normal. Do not be alarmed if you start feeling as if you were hit in the face with a baseball bat or have an aching jaw. All normal. Make certain that you have moist heat for your face (it really helps) and if the pain is uncomfortable you may want to ask your doctor for a painkiller, especially to help you sleep. I was able to tolerate all the pain during the day, but did take a mild painkiller to help through the night. The sleep was much needed and the pills helped.
You will get through this. We all do.
Today is day 6….second time round.First time I had BP was 6 yrs ago. Started with a tooth ache/infection and spread.This time round, it was an ear and throat infection that brought it on. When I went to see the Dr he told me that I ought to get checked for MS. Said that the BP could be a symptom of it. That’s a very scary thought!
First time round….I took about 3 weeks to get back to semi normal. I still had a lazy smile from time to time and my eye looked tired from time to time. And, I was wondering if it left anyone with a tickle in the throat?I find ….I clear my throat alot. Since the first bout of BP.
This time round…I feel pain, I never felt before. Alot of twitching and tingling.My eye lid feels cold.
I can sing today…and I can see some movement in my forehead.Even move my eye a bit.Feels good to know, there’s people out there to share with. I have never been a vein person but I have been pretty depressed!
Julie 🙂
Julie,
Sorry to hear that you have BP again. I have also had it twice. Each of us shares a lot of the same symptoms and experiences; however, it can also be different from time to time and person to person. My second bout was different from the first go-round.
It does sound like you are recovering quickly since you are twitching and you have some movement. Day 6 is pretty encouraging. Sounds like you will be back to your old self soon.
Jami
HI there everyone, I have had bells for 9 days now, i dont really see very much improvement yet, I got bells 2 days befor delivering my baby. I have been have terrible anxiety attacks since then, all i can think about is my face and the pain. when i touch my face it feels like the the whole bells side is bruised, and I have neck pain down the my bells side like a burning feeling. I have a lot of weird twitching feelings and get them on the not bells side, which really freaks me out and makes me anxious. loud sounds really bother me too. plese sometome tell me this is normal. im scared.
Charity,
It is NOT uncommon to get BP in the third trimester of pregnancy. Not sure why, but it is one of the triggers. NORMAL! Anxiety attacks….NORMAL! Bruised face…NORMAL! Weird twitching….NORMAL! Neck pain…..NORMAL!
Being scared is also normal; however, knowing that you are experiencing what we have all gone through should help to reassure you. It does get better. That is normal, too!
Take care.
Charity,
Sorry to hear you have BP. The pain does go away, so hang in there!! Try to enjoy your new little one. 🙂
Best Regards,
Eileen
I’m so glad I’ve found this site I thought I was going mad, I to was diagnosed with Bell’s palsy October 2012 started of with severe headache in the right side of the head and jaw pain, had a traffic accident 2 weeks beforehand somebody came in to the back of me but to tell you the truth I never thought anything of it mild damage to the car. Bell’s palsy happened so quickly never heard of it before, it affected my right side forehead eye wouldn’t blink and mouth drooped, I called it my dentist laugh. Within 2 weeks I started to get movement back I thought great fantastic how wrong was I, the pain is at times excruitiating feel like I keep having root canal treatment in my jaw head and neck pain leave me so tired, had MRI scan because of headache and feeling lopsided leaning more to the left, scan normal well they found a pineal cyst but apparently that’s nothing wouldn’t cause me any problems Abit like what they said about bells not causing any pain. currently waiting on scan of the neck results , so very grateful to you all on this site wish I would of seen it earlier . Many thanks to you all xx
Jewells,
Sorry to hear about your experience. It takes time. It has been 4 and 2½ years for me (I have had two BP occurrences) and I still have recurring pain. I have just learned how to treat the pain each time. Unfortunately, medical professionals are not very enlightened about BP.
Take care.
second time with it been over a week this time
did not remember this neck and head pain from last time
glad to know it is normal ..sort of
hope it heals soon
hoping not permanent
Wishing you a full and speedy recovery
thanks pain is ridiculous
The pain is crazy. Why isn’t this mentioned by the docs? I have to share how I have dealt with the pain, brain fog etc. If I sleep in bed flat I wake up feeling like I have been hit by a truck while I was sleeping. The paralysis is worse if I sleep in a bed. I wake up with pain as well. I awake disoriented and kind of dizzy. Horrible pain at night if I lay flat. It is nerve pain like sciatic pain in the neck and base of skull. When I sleep in a recliner I wake up with no pain. I can sleep without pain and I do not feel like I have been beaten up while I was sleeping. SLEEP IS ESSENTIAL for this disorder! I see slight progress when I sleep in the recliner. I regress if I try to sleep in bed. I am in week two. Tonight I have the terrible ringing in my left ear again. That went away after week one but its back. My mouth tastes like a mouth full of salt. Try sleeping with your head propped up or in a recliner. Wrap a warm towel around your neck tightly for support of the head. It works better than pain killers. I use a neck pillow for head support. I suspect a cervical collar would work as well. Now that the pain is under control, I am faced with the realization that I can not speak properly, I look angry and old. I am learning to deal with the eye not blinking with drops but the speech is very annoying. At first I was in so much pain, nothing else bothered me. This is awful. My husband tells me no one will notice. FALSE everyone notices and gives me the pity looks. Strangers must think I have had a stroke. Should I wear a sign?
: (
Hello I gotten BP on the left side if my face about 2month ago never had it in my life I’m 50 years old it Tock the the best of me was a big pain in the ass and everywhere in my face was feeling better about a week a go started to eat a little better my speech a little better the next thing you know I had awful pain in my right ear when I woke up it went to my right side if my face now still have it when dose it go away ?
week two here a lot of pain each time and person different wish I knew low long it takes
Nancy, the best scenario is a month. The worst a year. It depends on the degree of paralysis. Think of it as four levels. Level one, 1 to 3 months etc. I am using this as an example. The doctor told me mine is bad but not the worst they have seen so I am guessing I am around a level 3. Some people never get full recovery. This scares me a little. I am hoping and praying for the best. From what I have heard, at one year you should know if you will fully recover. The doctors do not even concern themselves with the recovery until after 3 months. Check out youtube progress videos and you can see exactly how it goes by the week with other folks. Relax and get a lot of rest. Avoid stress. Stress causes setbacks. Take good care of yourself, seriously.
Janel
thanks Janel hard to be upbeat with this pain
Rachel, please try sleeping sitting up if you can. Sleep is very important for recovery. The more rest the better. Also stress causes set backs. Any kind of crying causes horrible pain afterwards for me. Even if I just cry a little from a sad movie. My doc gave me ear drops for ear pain but it doesn’t help the pain behind the ear. Only pain inside the ear canal. It is very frustrating that the medical information does not put emphasis on the pain so those afflicted don’t have a clue about what is going on. Nerve pain is the worst pain. I would rather give birth again. I also used a heating pad in a towel wrapped around my neck and got relief from a lot of the pain in my neck, jaw, base of my skull and behind the ear. Rest and relaxation. That is all that you can do. Anything that you know of that is calming for you helps the pain. Tension in the neck and shoulders makes it worse. I don’t understand why. There are pain meds for nerve pain you can ask you doctor about. The medical community doesn’t take this condition seriously because in the long run, most people recover. It is a good idea to get your blood sugar checked. Diabetics are prone to Bells and recurrent Bells as well as other nerve conditions. God Bless
Janel
I have had Bells Palsy for almost three years. I got it for the first time on the right side of my face and a year later (while still fighting symptoms from the first onset) I developed it on the other side too. I sought acupunture treatment and that helped a lot. The symptoms on the left side disappeared immediately and the symptoms of the initial onset on my right side improved. I still couldn’t smile or lift my eyebrow on the right side but it was not as noticeable. Now, three years after the initial onset I have developed it again on the right side. This time i got the horrible neck pain and headaches, which I didn’t get the first time. I was involved in an auto accident a couple weeks ago so i’m not sure if that triggered it. All I know is i’m at my wits end and i’m tired of fighting this. I really don’t know what to do at this point treatment wise.
Seriously, why isn’t there more research being done? Where can we get help? It seems like the medical profession should know way more about this than they do. Gee, do I sound frustrated?!?!
I couldn’t agree more. No doctor has ever been able to tell me what causes this. All they do each time is throw prednisone and anti-virals at me. None of which help. I’m really at my wits end.
I think that we all feel your frustration. We all find out fairly quickly that medical personnel seem to know very little about BP. We learn about it from each other. E.R. doctors are much more knowledgeable since we have no idea what is happening at the time and rush ourselves to the hospital. Those doctors see it much more often. Even the specialist that I was sent to (and he is voted one of the tops in his field each year in our area) was startled when I visited him the second time. He assumed that I had just not recovered when he saw me and the look on his face when he realized that my second bout was on the opposite side. Not too surprising, I was not feeling any confidence in him by that reaction.
Since we have to rely on each other, it helps me to be able to “pay it forward” by helping share my experiences with other BP sufferers and to continue getting feedback from others to know that I am not alone with this.
Katie, has your doctor checked your blood sugar. I read that high blood sugar can be related. I gave up sugar and carbs for a year and was just starting to eat carbs and some sugar again when I got it so I am wondering if there is a connection for me. There seems to be a lot of sufferers who get it again. I cant even go there is my head. I am in week three. My speech has been affected. I was in the process of looking for work so this is just really bad timing for me. Who would hire me like this. My field is advertising sales. It is a struggle for me to get my words out and the pain and dry eye is awful but this is not considered a disability??? I am so confused by the medical facts on this condition. If I sit still in a recliner with my neck immobile, I get some pain relief but working with this pain would be impossible. I am so confused. How do people keep working with this disease?
I have not had my blood sugar checked but I can definitely do so. i’m willing to try anything at this point!! Working is hard with it. I have to use the telephone a lot in my line of work and sometimes I have to try very hard to pronunciate as I end up sounding garbled. This time the speech was not effected too badly. I only have problems with letters or words that make me purse my lips. F’s are hardest. This is the third time i’ve had it and each time has been different.
BP gives a whole new meaning to the “F” word. B, M and F words are the worst. Two and a half years later and I still have to pay close attention to enunciating every word. I know that I am getting tired or not paying attention when people start asking me to repeat myself.
Katie, how are you working with the pain? I don’t think I could do it. When I went to the ER they rushed me in because they thought I might be having a stroke. When they realized it was Bell’s, I was dismissed like I had a cold. The reaction to Bells by the medical professionals is strange. I guess because it isn’t going to kill us, it doesn’t matter. All they say is eventually it will get better. That sounds positive at first but better is not always normal. Better can range from 10 percent to 90 percent better. This is not good news to me. I am glad I wont die from Bells but I want to be my old self again : (
Now that I know what Bell’s looks like, I have noticed people on TV that look like they have residual Bell’s damage. Whenever I see a crooked smile, I wonder if that is what it is now. I look angry on the Bells side of my face and goofy on the normal side of my face when I smile. What a mess. Who would hire me like this?
It’s hard to work (or do anything in public) with BP. My company and co-workers have been very encouraging. The pain didn’t hit me with the first or second occurrence. I did have extreme pain this time but i thought it was from the car accident I had a couple of weeks ago. I’ve been receiving PT for that since the accident. The neck pain and pain behind the ear came on suddenly and I thought it was in relation to my PT. Then came the effects on my facial nerves and I realized I was again suffering from BP. I don’t know if this latest onset is a result of the trauma from the accident or if it is independent of that. That’s what makes this all so confusing. There are just so many questions and no answers.
So, I haven’t had problems working (with the exception of having to slowly speak sometimes in order to speak clearer). I HAVE noticed that I avoid any loud public outing.because any loud noise or yelling will cause pain to shoot trough my ears.
Oh yes, the sound level can be terrible! Like someone is next to me with a megaphone. Certain sounds still drive me insane. At sporting events I put my Walkman earphones in my ears to mute the noise. Clapping and the sound of the metal from pots and pans hitting each other is awful.
In my opinion, the accident brought on your current case of Bell’s. The pain you have sounds like Bell’s pain. The reason I think your pain is from Bells is because trauma can contribute to the onset of Bells. An accident is very stressful. Even minor upsets increase the nerve pain I have. Stress of any kind in my case, causes the pain to increase. Don’t cry for any reason OUCH! If your pain is more in the muscles than it could be from the accident. But the accident could have been the Bells trigger. My pain is severe nerve pain. It is distinctive pain. Not soreness but sharp burning pain, although I and many others do have soreness all over the Bells side. It feels like your face and neck are bruised.
I think so too. This didn’t start until I started physical therapy for the pain from my accident. The pain in my neck is very sharp and constant and brings on migraine like headaches. When I talked to my phsyical therapist about it he assured me that nothing they were doing in my sessions was even close to touching on anything that should trigger my BP again. So, i’m left to assume it is the stress from the accident and the from the tension in my back and neck from the accident. I am continuing to use moist heat therapy on it and may seek acupunture again if it does not seem to be improving.
I worked both times with BP. The first time was during tax season and I really needed to be at work. The specialist said that it was up to me if I wanted to work. He said that I would feel just as crappy at work as I would at home so I opted for the distraction of work. My colleagues were great and stepped in to help me so that I did not have to deal with clients especially since talking (and being understand) at the beginning is so difficult.
I wish for my old self back all the time. Once I leave the house I dread catching a glimpse of my reflection. I think that my expression looks flat when I am not trying to smile. I can smile, but it is lopsided. I always hope that people just think it is quirky. My brother had BP when he was 9 (in 1974) and I never really noticed until last week when I saw him speaking on a video that he still has lingering effects. I think I only noticed because I recognize the same problems that I have. Strangers have no idea that he had it and I cannot see why they would.
The point is that we usually recover either fully or enough that no one can tell. You will be hired.
Janel – Were you given pain killers? My first time I did not have pain killers and I was barely able to make it through days, but nights were terrible and I slept very little. My second time when the doctor was prescribing me the sterioids and anti-virals I asked for a painkiller. They really helped. I only took them at night to help me sleep. It took enough of the edge off of the pain so that I could rest. The doctors are very unaware of the pain.
working with this is a no brainer for me
I can not afford to take a lot of time off
called off sick 2 days out the 5 weeks so far
yes I’m counting
I have to talk to my drivers over a 2 way radio
it is frustrating often having to repeat my self
I work with a bottle of lubricating eye drops in my pocket
but until I win the lottery I’ll keep pushing myself out the door to work
When I asked the doctor if I should work he said that I had two choices – to be miserable at home or miserable at work. I worked. It provided me with some distractions and I feel like I was able to tolerate the pain more because of those distractions. The people at my office were very supportive and spared me from speaking to clients (both in person and over the phone) as much as possible. Obviously, speech (and being understood) was a problem for awhile. It does get better.
P.S. I still keep the lubricating eye drops with me.
My first “go round” with BP was 4 years ago. Nineteen months after the first onset I developed it again on the opposite side. The first time I recovered fully with occasional bouts of pain/aches that still revisit. Moist heat works wonders for this. This second time I did not fully recover although no one seems to know by looking at me. I personally have not tried acupuncture. I have heard good things about it, but the thought of the needles make me uneasy. I visit a craniosacral therapist (CST) weekly. It was recommended as a healing tool after the BP returned and it is used by a lot of BP sufferers. For me I do not think that it has affected my physical recovery; however, CST provides me with peace, relaxation and a way to calm my stress, which we all learn is a big BP trigger.
I haven’t tried craniosacral therapy but I will look into it. Again, I am willing to try anything at this point. I know acupuncture sounds scary but it really isn’t. The needles are very tiny and you hardly feel them go in. Not only did it help with my Bells Palsy but it also helped me sleep better and feel more relaxed.
Has anyone tried lymphatic drainage massage?
No. I have not heard of it.
Relaxation and better sleep is what the CST does for me. Lovely healing hands. My therapist also uses aroma therapy. The relaxation is immense and I try to keep that feeling with me each week until the next session.
Jami, I was offered pain killers but chose not to take them. They make me sick to my stomach. I use Aleve and heat and I manage but it is still there. I have to support and disable my head and neck to get relief. I cant lay down.I can not even raise my voice to call our cat in. This is crazy
I totally understand. My first time I was so tired I would fall asleep sitting up on the sofa. I did not look forward to any position other than sitting. The first time the doctor told me to alternate every two hours using Tylenol and Motrin. It did not help. I am not a fan of medication, but I was not going to go it alone the second time. I asked for a mild painkiller which really helped and it did not make me sick. You may want to try a mild painkiller. An upset stomach may be a fair tradeoff for some sleep. The pain does get better . I think that is the worst part.
Try soaking in a really hot tub. I am not a “bath person” but I found hot water very soothing when I was in the acute stage of BP.
Hot bath takes care of the moist heat and the relaxation. Definitely what is needed.
Janel
pain meds make me sick too
but if I take the anti nausea meds 1st
then the pain med about 30 minutes later
I do okay
plus as recommended I also have eaten dinner or something substantial
otherwise I can time it I throw it up an hour later
Thank you. That is a great idea RE anti nausea med
Comforting and healing … This is what this sharing place is. Thank you for this site. Reading your words of support is magic. On Dec. 6, 2012 I awoke to BP and was treated in stroke center. I was relieved after CT scans to “only” have Bell’s Palsy. It’s an expensive trip that will take a while to pay off. A vacation in Hawaii for two would have been more fun and less expensive. Listening to all of you sounds so much like what I experienced. At first I went through a few months of eye infections. Eye doctors couldn’t figure out redness and pain, recurring neck pain, then ouch! Bell’s Palsy was like a thief in the night taking the right side of my face and scaring th rest of me. It took me two weeks to return to work ( I own my own business) and I am in front of people as a trainer and hypnotherapist. What helped was dong daily facial massages, using eye lotions and bandages to keep my eye shut, relaxation exercises, and distracting myself by trying to learn a new computer program. I took a couple weeks off to focus on healing and cocooned at home, receiving lots of attention from my life partner. Thanks to being in a world of alternative therapy… good ideas were all around. Warm herbal neck wrap, massage, chiropractic, acupuncture was offered, and the ER put me on antiviral and prednisone. It’s been five months and the neck pain flares up, and I do relaxation visualizations. We walk daily, eat very healthy food, and enjoy herbal tea as well as coffee. The facial massages are great! I didn’t see this blog at my onset, and this is a comforting experience. Thank you for creating this healing space! Good luck to all of us, and let’s keep sharing.
Cat,
It has been a little over 2½ years since BP “was like a thief in the night taking the right side of my face and scaring the rest of me” (well put). and I still use this site for comfort, healing and sharing. Wishing you a full recovery!
My supreme thought: Full recovery. I did take the time to consider, “What did I learn from this?” In my scenario the answer was to stop, pay attention, and draw more ease from being flexible about doing too much too often… as you can imagine, I am giving myself more me time. I passed this blog to my daughter (who has a bizillion contacts) and she thanked me … saying her friend just got “the earache” and the “BP” and could use this! Nice. Nice.
Very true that the lesson that we take from this is to slow down and take care of ourselves. My mantra (taken from James Gurney’s book Dinotopia) is “Breathe Deep, Seek Peace.”
four weeks in a lot less pain
but still all the paralysis still there
hoping it’s heading the right direction
I am in my 5th week, no pain now. Paralysis about 20% improved. Speech still a bit of a struggle. That gets better and then worse again. I have tingling in my lip and a little in my cheek. I have heard that is a good sign. Keeping my fingers crossed. My eye is less dry but still is drooping. Just an update for those of you in your first week. Very slow progress but still there is progress. I forget I have it almost, until I try to get made up to go out. Make up makes me look worse so I just do my brows deliberately, lower the normal brow and raise the droopy brow, foundation and lip gloss that is it. Eye makeup makes me look very lopsided and draws attention to the droopy eye. I am praying and hoping for a full recovery. Now that I know about Bells, I am noticing other people who have slightly crooked smiles or a slightly droopy eye lid. I never noticed these people before. I wonder if all Bells patients end up with minor issues. Maybe 100% recovery is rare. Just wondering.
It is absolutely possible for a 100% recovery. My first occurrence with BP progressed by the book. From onset to recovery it was about 6 weeks. I still have occasional nerve discomfort; however, all of my facial functions returned to normal.
Thank you for letting me know. I am sorry you still have the nerve pain. Nerve pain is awful. I am still having ringing in my left ear although the Bells is on the right side. Did you have ear issues? It comes and goes. It is pretty bad right now. The pain stopped just this week. During the first few weeks, noise was amplified and very uncomfortable, then the ringing started.
Have you seen the Bells recovery videos on Youtube? Most of them did not fully recover. Just slight differences not major issues that other people notice. You give me hope but I am in my 5th week and still have the droopy eye and cant smile on the right side but I do see progress. I have twitching in my chin today. I think that is good. I guess every case is different. You were 100% by week six, Wow, that is amazing. I hope next week is my big week. I am looking for a job and the speech problems are making it impossible. Did you progress and then regress? That is happening to me. I don’t understand why this is happening. It even changes in the same day.
Hello, today will be a week I was diagnosed with BP, I’m 26 and a mommy of 2 little boys. This is hard to deal emotionally. I started with beyodecta tri injections on my 3rd day and now I can move my lower lip and blink a little as well. These injections contain vitamin B12 and some others vitamins they are 5 injections and have been used before by other family members. Today I’m feeling the terrible pain on my jaw and its excruciating 😦 but ibuprofen 800 mg seems to help.
The jaw pain can be terrible and fortunately the ibuprofen is working for you. It is a good sign that you have movement returning in your lower lip and that you are getting back your blink. Your quick progress sounds like you should be well in a few weeks. Take care.
Can someone please answer if possible. I’m on day 3 or 4 had a small breakdown this morning and could not go to work. I am able to close my eye if I concentrate from the top/ not a blink but it closes. Does anyone know if it lubricates it or is the Tear gland actually paralyzed also? During my breakdown I sadly was able to cry out of it.
Thank you having a tuff time. Jon
Jon,
I am not sure exactly why there are a lack of tears with BP. The tears and the blink will return in time.
Blinking naturally coats the cornea of our eyes with tears; however, without the blink you need to make sure to use artificial tears or lubricating solution so that your eye does not feel overly strained, burn or have a bit of blurry vision. The artificial tears really helps to alleviate those side effects quickly.
The breakdown is understandable. BP is scary and being paralyzed can feel claustrophobic. I know that is how I felt. Try to do whatever you can for yourself to relax and not stress too much. That may seem hard to do, but stress is a major trigger and you need to take care of yourself and relax. It takes a little while to recover so take a deep breath.
Take care.
Jon,
Trying to cheer you up. From my perspective it is amazing that you can close your eye already. I couldn’t close mine at all for six months. Hopefully you will recover quickly!!
Eileen
I recently had to see an eye dr because I was having some blurred vision,some dark spots and it was scaring me….I thought I may have permanent damage to the eye. I did a test to check my blindspots and the other eye was worse the the bp eye! It will get better! But, the dr told me it is very important to lubricate the eye.You may think it is closing completely but it likely, isn’t. Patch it or tape it at night.
Good luck ….hope you recover quickly.I’ve had it since the end of March (2nd time round).
:)Julie
Hi everyone! I am 25 weeks pregnant. I was diagnosed with bells 8 days ago. I hate it! At first, I had no pain at all, my face just felt numb. But a couple of days ago my face began to hurt! Although it only hurts when I touch it, I cannot stand it! I hope that the pain is a sign of healing. Everyone tells me they don’t notice I have it unless I point it out, which is awesome but I am just very self-conscious about it. My doctor said it should go away in about two weeks which i hope it does. My face just feels so sore… is that a healing sign?
not necessarily but I’m sure for you it will go away soon
Claudia,
I am not sure if it is a healing sign, but the pain is absolutely normal for BP. Try moist heat, it will help. The average length of time from onset to recovery is 6 weeks so if it does not go away in 2 weeks like your doctor said, do not be discouraged. Unfortunately, it has been the experience of a lot of BP sufferers that doctors do not seem to know a lot about the virus so we learn from each other.
Try to rest and relax.
PS I went to a neurologist today apparently thyroid problems are common denominator in some
my palsy has yet to go away this time
have had it since April almost 4 months
I try to look at it as other people have much worse problems
this is my second time having it last was Oct 2009
resolved much quicker then
crossing my fingers
Nancy,
Sorry to hear that your second time with BP is not resolving as quickly. My first time (in 2009) was about 6 weeks start to finish. My second time (2010) took about 3½ months before I saw the slightest movement and it was much slower to come back. I did not fully recover; however, I seem to be the only one who can tell…..thankfully. No one seems to know and are surprised if I tell them.
It will get better, just taking its time!
Hi , I am now 9 days with being diagnosed with BP. Big big shock & extremely affected my life.
So much has happened in a week,
Drs has been useless & cannot tell me much about BP as they don’t know , so this blog is very good for advice & comfort.
I have had a recent car accident causing pain & discomfort in my neck & shoulder area, I’ve been getting severe pain & burning from my neck, back of ear & left side of head.
Last week I got worse & my left side of face become paralysed & thought I was having a stroke!
I was rushed to hospital & was told it was BP.
Blood tests comes back clear of a virus plus MRI scan clear of MS or TUMOUR. ( which was great news)
But still do not know what has caused this?
Can it be linked to the car accident, I have read a few blogs on here & they were also involved in car accidents.
I’m not getting no answers from my GP.
I’m taking everyday as it comes & trying to get healthy for my 3 wonderful children.
Carlee, I do not think that the car accident caused the BP directly. BP is a virus that can live in your system until something triggers it. Stress is a HUGE trigger and the stress of the car accident may have been what brought it on in your case.
Good to hear that all tests were clear. The pain (and burning) is normal and it will get better in time. Moist heat works wonders. Unfortunately, as most of us have discovered, doctors do not know that much so we have to rely on each other.
Try, if you can, to relax and rest. That is important.
Is BP a virus?
BP is a mostly caused by a virus (that affects the 7th cranial nerve) that can sit dormant in your system until something triggers it, which is why one of the drugs given at onset that we are all given is an anti-viral. Some BP sufferers who get BP repeatedly take medication everyday to try to keep the viral load down.
Other causes are Lyme Disease, tumors and, not sure why, third trimester pregnancy. Most of us are tested for Lyme and have MRIs to check our heads. Those ruled out it is usually brought on by a virus.
Hi
It’s now been over a year since my BP.
I got all my movement back in my face but got the chronic pain in my face, back of skull and arm etc.
I had physio on my neck which really helped and reduced my pain but slowly in time I’m back in pain with my neck and now got the chronic pain back in my face ,ear , back of skull and arm .
I’m back on my medication for nerve pain.
I’m so scared that I will get BP back in my face, where I lose my facial movements again.
I was absolutely devasted when I was diagnosed with Bell Palsy and its really affected my life ( like all BP sufferers ) .
Just can’t cope with work , kids or any kind of stress.
Will I ever have a full recovery?
Carlee
I got Bells Palsy a second time
Four years later
Some of my facial paralysis is still there around my mouth and eye lid
It has been a year and a half
The pain was short term luckily
But I still use a straw to drink coffee hot or cold and other liquids
Hope eventually it will go away
eventually
Carlee,
It sounds like you recovered fully from the paralysis from BP, but are still having problems with the recurring pain. I am dealing with the aftermath of my second time with BP (on the opposite side as the first time). The first time I recovered completely and this last time I recovered enough that no one seems to know unless I tell them – even though I still have partial paralysis. With that said, I still have the recurring pain – mostly on the fully recovered side. Whenever the pain decides to revisit I have moments of panic wondering if I am getting BP again. Having had it twice I think it is always on my mind. I treat the pain with moist heat and try to relax so that the undue stress does not make it worse. The pain does resolve itself in a short while. I have craniosacral therapy every other week and it seems to help me. I was original told to try this therapy as it is recommended for BP sufferers. I am not sure how it helps, but I do think that it helps me. That and my old standby, my moist heating pad.
Continuing to stress yourself will only make the pain worse. Dealing with BP can be tough; however, as we all know, we have to keep the stress to a minimum and that really does help.
Over time my bouts with the pain are not as frequent and do not last as long so you do need to give it time. BP takes its time and everyone’s timetable is different.
Feel better. Take care.
PLEASE HELP!!!
Hello! My name is Amy. I was told i havebells palsy about two weeks ago. I woke up one morning with a paralyzed face and neck pain. I took a round of steroids and started physical therapy. Neck pain got better after first week, however 2 weeks into this, i have now developed SEVERE FACE PAIN!!! It is hurting without even touching my face and it feels more like a deep pain, not a skin surface pain. It hurts prett much all over but especially my jaw, under my cheek bone, the front of my ear, and next to my nose. Wanted to know if this kind of deep pain is normal or if anyone else has experienced pain like this?
Hi Amy,
Yes, unfortunately it is normal for some cases – it does feel like you have been hit in the face with a baseball bat.
Read through these posts and find out what works best for you.
Hot compresses, pain meds.
Hang in there, the pain does go away eventually.
Amy,
It is totally normal! The pain feels like someone smacked you across the face with a baseball bat. We all go through it and it will pass. Moist heat really helps and, if necessary, a painkiller. I found that a mild painkiller at night helped me sleep until the pain became tolerable and then passed.
Wishing you a speedy recovery.
Like most here I just discovered this website which has been encouraging me on my path to getting well again. Im on day 18 and still not able to smile. Very frustrating and I feel my progress is a lot slower than most.. I can now say say though that my lower eye and muscles around it can twitch on command. Every day it is getting stronger. I dont know why my mouth isnt working still…im getting a little little discouraged. ..
StyleWatch,
Do not get discouraged. The average length of time for progress and recovery is between 3 – 6 weeks; however, it can also be longer as many of us know. Unlike the onset of BP, recovery does not happen suddenly. In time, you will notice the smallest of movements. We all understand wanting to get better quickly, but it will happen.
Jami/Vickie,
Would it be possible to start another blog like this one for long-timers? I would like to compare symptoms/problems, etc. but don’t want to post discouraging thoughts for those who find this site and will be well quickly (which is about 85% of BP-ers).
That is great idea. I am in month five so I don’t post comments because the new Bell’s peeps sound so hopeful. I don’t want to scare them or discourage them. I do think they need to know about the pain in the beginning though. The docs don’t mention the pain for some reason and they should know that severe pain could be an issue. I was caught off guard by the pain.
Janel,
Try bellspalsylongtimer at wordpress.com for a new longtimer outlet.
Eileen / Vickie,
This is Vickie’s blog and I was happy to have found it when I did because of being a long-timer. Vicki really helped me and, being a long-timer I still need encouragement. Are you a long-timer?
I know that I try to choose my words carefully when I respond to new posts so as not to discourage (or scare) those that will heal and recover quickly. I have had BP twice. First was quick and now I am a long-timer. I would love a “long-timers” blog.
Vickie, is that something that you would want to do (or even have time for)? I so appreciate that you started this blog and would love a different version, as well. If not, I would figure it out; however, I am afraid that, without your humor, it would not be nearly as interesting.
I am off my cranio-sacral therapy. It helps with some of lasting side effects and helps to relax me, too. Ideally it keeps away the stress, which, as we know, is no friend to BP.
Thanks ladies.
Eileen,
Try http://bellspalsylongtimer.wordpress.com/ for a new longtimer blog
Ahh. Me to a T. Did you write this?
Why are tears streaming down my face right now (at least one side)? 🙂
Thanks.
Oct 16th will be my 1-1/2 year mark.
Yes, Eileen, that is my story and, obviously you know it well. I am always happy to help the new people that post to this site, but like the other longtimers, really needed to talk with those who share our story. Now we have our own place.
Janel,
I honestly do not think that the doctors know about the pain. The first time my internist would not prescribe pain meds and, instead, told me to alternate between Motrin and Tylenol if I needed something. Clearly, he had no idea. The second time I was smart enough to ask a different doctor immediately for pain meds (it was an E.R. doctor who sees more of this) and that little pill (as needed) really helped make the pain tolerable and took the edge off so that I could sleep (and heel).
You said you are at five months. Have you had much progress?
Off to therapy. Take care.
hello my name is linda ive had bp for 2 wks the last 2 days im in agong pains in my head behind my ear down my neck can you suggest anything i can do or take plz
Linda,
Pain meds work to take the edge off the pain. If you have a doctor that you can ask I would not hesitate to do so. Even if you try to deal with the pain during the day, a pill at night to help sleep through the pain works. I dealt with the pain during the day, but used the painkiller at night. I only needed it for a short time.
Additionally, a moist heating pad works very, very well. Make sure it is a moist heating pad. It does not rid you of the pain, but it will make you feel better when using it. It was my BEST friend!
You all are seriously so sweet for getting back to comments etc. I appreciate you and wish you all well! 🙂
Vickie
8 Months in
I posted on your site in February when I was diagnosed with BP. my face improved quickly (I know I was lucky) but the pain is going on and on. I seem to be fine for a few weeks then back comes the neck and jaw pain and then anxiety attacks. It really is a very frustrating virus as it hits you without any reason as on this occasion I have been on holiday relaxing and then the pain started.
I have read that this can happen but any suggestions on dealing with the pain or how long the pain goes on for ?
P.S I have learnt more from this site than any of the Doctors that I have seen Including Private.
Thanks
Nina, try a cervical collar for the pain. You can buy one at any pharmacy if you are in the US. It relieves the pain without medication. Also try sleeping with your head elevated. That helps as well. Sleeping in a recliner helps too. If you cant get one where you are, wrap a rolled towel firmly around your neck. Best Wishes.
I am really glad to hear that you recovered quickly and sorry to hear that you still have pain. I am three years in and I still have recurring pain. I do not take any medication to help, but I continue to swear by moist heat, which I have said often on this site. That really helps a lot.
I also suggest that you try to manage the anxiety attacks. I had them with my first bout of BP and I was able to get them under control. Stress and anxiety only help to make our situation worse. I continue to find ways to stay as relaxed and stress free as possible. It really helps.
Try the moist heat and see if that works for you.
Take care.
I had BP attack in Dec2011…. the movement came back within a month, but the pain remains. I am now on Amitriptylene 20mg at night…. hate taking it as it is an anti depressant, but in small doses it relieves nerve pain. I would be insane without it. try it. Ask your doctor.
I am really sorry to hear that your recurring pain is bad enough for pain meds. It makes me feel fortunate that I am able to deal with mine using the heating pad. My preference is not to take medication, although at the height of the attack pain killers were most definitely a life saver. Have you tried acupuncture? Many BP sufferers have found a lot of relief with the therapy?
i was diagnosed with B/P in Feb of this year 2013 still have pain in my face lips seem full and eye still isn’t doing correctly.
Are you doing anything for the pain? Moist heat is great. The eye (the blink) always seems the slowest to recover. It took awhile for me, but my blink did come back.
Every person is different but sleeping flat caused the pain to increase in my case. Try sleeping with your head elevated and on your back. Laying on your side puts pressure on the face/nerves and in my case contributed to increased pain. I also took Aleve because I do not like the side effects of prescription meds. I am six months into this. My face is still tender to the touch, I cant pronounce certain letters and my eye is still dry but thank God, the pain has subsided for the most part. I also get increased numbness if I sleep on my face. Best of luck to you.
ANYONE OUT THERE IN BELL’S PALSY LAND HAVE HIGH PITCHED RINGING IN THEIR EARS? I AM WONDERING IF IT WILL EVER GO AWAY. I AM IN MONTH SIX. IT NEVER STOPS. I HAVE LEARNED TO IGNORE IT BUT IT IS ALWAYS THERE. IT STARTED ON DAY ONE AND I STILL HAVE IT. SOME DAYS ARE WOSE THAN OTHER BUT IT INEVER GOES A WAY.
I do not have the ringing, but I have a whooshing sound in my ear when I move or open my mouth.
Yes, I have ringing in my ear (tinnutis) but only on my BP side. I also have trouble determining where sounds are coming from. And I feel like my ear is congested. My GP has checked my ears twice and confirmed there is fluid there.
Thankfully I only have the whooshing and not the tinnutis. Also, certain sounds are SO loud and drive me up a wall. Clapping is too loud for me and pots and pans, the metal hitting up against each other, is enough to send me over the edge.
Me too! I keep cotton balls in my purse. 😉
Its been a yr and a half since my bp diagnosis. Paralysis is completely gone with no drooping. Still have lots of ear and neck pain. Lots of swooshing in ear on bp side. I always have fluid in that ear. They say its from permanent nerve damage from the bp. Ive tried everything to clear up the fluid but it always comes back. The ENT wants to put a tube in that ear. Loud noises make me crazy. I had a hearing test and my hearing is delayed on that side. Long after the bp is gone, the effects still hang around.
Jami,
We need to introduce Kelli to the Longtimer’s webiste.
Kelli,
It’s been a year and half for me too – 4/16/12. What was your BP start date?
Kelli,
Another good site to check is http://bellspalsylongtimer.wordpress.com/
It is for longtimers. This past September 19 was 3 years for me.
Thanks!
I am a breast cancer survivor .. dx at 27 and now at 39 have bells palsy. I didn’t take the news of my breast cancer as badly as I have the BP.
Is it normal that my doctor does not seem to be concerned about my bells palsy? I’ve been to 2 follow up appts after my ER visit to find out what was wrong with my face.
I am now scheduled to see a neurologist that I decided was needed. Doesn’t my Dr want to know what’s causing the bells palsy? I’ve been super stressed lately and the BP isn’t getting better after 2 weeks and 1 day. My panic attacks and sleeplessness have increased to an almost unmanageable state.
I hope the specialist will take a different approach to things.
Any thoughts?
Michelle,
Yes, it is normal that the doctor is not concerned. Unfortunately, most of us have found that doctors do not know a great deal about BP. Doctors may run a few tests to determine what is NOT causing it; however, more than likely it is just the mystery of BP as we all know it. I am not sure that you will find more information from the neurologist.
You are 2 weeks and 1 day into BP. It is early yet. An “average” recovery time is between 3 to 6 weeks. I know that it is difficult not to be stressed, but stress will not make it better. Stress is thought to be a trigger so, try to take care of yourself and relax. I had panic attacks, too. BP is scary and not being able to move your face feels claustrophobic sometimes. My panic attacks were so bad that I resorted to medication to help calm me. The meds worked, but I did not care for the side effects so I stopped the medication and looked for other ways to keep calm. I bought some guided imagery CDs and listened to them a lot. At the same time I put a cotton ball with lavender oil in my pillow for the calming effect. You have to try whatever works for you to relax.
We have all been through this and understand how you feel. It does get better.
Take care
Michelle,
Yes, it is normal that the doctor is not concerned. Unfortunately, most of us have found that doctors do not know a great deal about BP. Doctors may run a few tests to determine what is NOT causing it; however, more than likely it is just the mystery of BP as we all know it. I am not sure that you will find more information from the neurologist.
You are 2 weeks and 1 day into BP. It is early yet. An “average” recovery time is between 3 to 6 weeks. I know that it is difficult not to be stressed, but stress will not make it better. Stress is thought to be a trigger so, try to take care of yourself and relax. I had panic attacks, too. BP is scary and not being able to move your face feels claustrophobic sometimes. My panic attacks were so bad that I resorted to medication to help calm me. The meds worked, but I did not care for the side effects so I stopped the medication and looked for other ways to keep calm. I bought some guided imagery CDs and listened to them a lot. At the same time I put a cotton ball with lavender oil in my pillow for the calming effect. You have to try whatever works for you to relax.
We have all been through this and understand how you feel. It does get better.
Take care
Thank you for the advice and words of encouragement Jami. I’ll continue to keep up with this site. It does help to know that I’m not alone.
You are DEFINITELY not alone!
DITTO. Stay calm. Stress definately not good for the pain.
Along with the rest of you, I am finding comfort and good information from this forum. I am almost at my 3 week mark for BP. I have taken an 11 day cycle of Prednisone, Have had 6 acupuncture treatments with electro stimulation with some Chinese herbs. The acupuncture seems drastically help each time I have a treatment, however, the progress of healing seems to have slowed the past couple of days. A new development is the excruciating pain I have in my ear at night and morning. It feels as though a screwdriver is being jammed into my ear. I take ibuprofen and it seems to dull the pain, though not completely. My eye does blink, just not fully, and my vision gets blurred throughout the day. I mostly feel hopeful but sometimes I get scared that this will not heal completely. I feel that I have recovered about 75%. The pain and my eye are what concerns me the most. What do you mean by “moist heat?” Also, I have been taking B6 and B12 but do you think that Vit B injections could be beneficial? I just called my Dr. and left a message inquiring, although she does not seem to know much as others have expressed. Thank you all for your encouraging words and positive outlook. It can feel like a very internal, lonely process and thank goodness for the internet with information and online community support!
Aubrey,
It sounds like you are recovering quickly. Hurray!!
For moist heat, I ran hot water over a wash cloth and then applied it to my face and neck until it cooled and then repeated. Also, water as hot as I could stand it in the shower.
Aubrey,
The blurred vision is due to your eye not blinking as it should. When we blink our lids cover our eyes with natural moisture and since this is not happening as it should we need to help it with artificial tears or a lubricating solution. I carry some with me at all times. Use it as needed and you will find that your blurred vision clears up.
I’ve had BP for over 2 months now. People are telling me it looks better, but I don’t feel better. I am so depressed, and feel like this will last forever. The ER gave me anti viral meds and 10 days of steroids. My doctor did nothing on my follow up appt and told me to wait it out. I miss my smile. I miss blinking. I will never ever take that for granted again. My opposite side is now having pain at the nerve side and I fear I am getting it on that side too.
First of all I am so sorry that you are depressed. The real truth is Yes it will get better but how much better no one knows. Every person is different. Every outcome is different. I am 70% recovered.
I am told my face looks better but when I look at my face, it is not the same so when I am told “it looks better” it really doesn’t make me feel better. I do not look like myself after 10 months. The pain did get better though but my speech bothers me the most now. The right side of my face is about 1/3″ lower than that left. It is still enough to bother me. When I force my eye shut, my lip curls up. My doctor told me it would get better in 3 weeks to 3 months. No one warned me about the horrible nerve pain I had for 2 month. I also get symptoms on the other side but nothing happens. It scares me though. I never thought in a million years I would still have this after 10 months. I have heard that what I have left after a year is most likely not going to go away. Regarding the doctors, there is no real treatment for Bell’s so the doctors do nothing. My doctor didn’t even give me steroids. I got no treatment at all. I wish you the very best. Try to focus on the future. You will get better. There is a good chance you will recover fully. On youtube people with Bell’s video their progress. I found it helpful and very interesting. Check it out.
Janel is right about every person being different. It even applies for each occurrence of BP. I have had it twice and each time was different. We are so intimate with our own faces that we see the changes even when others do not. I am always so surprised that people have no idea or that they do not see that parts of my face do not work as they should. I feel it and I see it. It makes me self-conscious, but no one knows.
The medicine that the doctor gave you is standard protocol. Who knows if it really helps? Follow up appointments with doctors, as most of us know, are not helpful. BP has to run its course. Average recovery is 6 weeks. Two months is still early. My second time with BP I did not see any movement until almost 4 months.
I know that it is frustrating and can be depressing. It does get better……just not as fast as we would like.
As for the pain on the opposite side, I had/have that, too. I think it must be from the good side having to do all the work. Face pain is not a symptom of the onset of BP. It is a side effect.
You really have to take care of yourself. Try to relax and limit stress. (I know, not so easy!)
The following is a link to another blog which gives a week-by-week account of BP. The link should take you to the first post.
Take care.
I was diagnosed with Belles just a week and 2 days ago , Im 34 yr old female with type 2 diabetes, reading up on Belles some suggest this plays a part. I was given The meds for the first week but now ive finished them i feel the pain in my ear neck, and shoulder muscle, my jaw is very sensitive and my eye doesnt blink all the way, i feel tired and sore constantly, i hate taking medications but its that bad that im going to have to..can anyone suggest the best “pain relief” sounds like i have long road ahead of me and just need to get use to the idea. I was depressed at first but have a lot of support around me, i havent really enjoyed a single day since i found out with no sleeping properly and the pain..looking for a quick fix but knowing its not poss.
Karina,
So sorry to hear that you have BP. For the pain and how to manage it, it depends on your pain tolerance. I am also not a fan of medication; however, I found that having a mild pain killer to help me sleep worked well for me. My first time with BP the doctor would not give me pain meds and it made for many sleepless nights. I was miserable. The second time the doctor prescribed them at my request and, although I only needed to take them a few times, it really helped.
Additionally, moist heat really works wonders. It not only helps with the pain, but is soothing for the stress. Definitely try moist heat. It will be your best friend.
Try keeping calm and relaxed. Stress only makes BP worse. You will get better soon enough. Take care of yourself.
I wish I had seen this blog/thread back in June! I still have weird “tugging” feelings in my face and near my eye, and now I have a new annoyance – a twitching in my neck (same side as my BP). Every odd feeling or pain brings so much anxiety. Anyone have neck twitching? It doesn’t hurt at all, just annoying (and causing anxiety). Thanks 🙂
You will find that different symptoms may come and go. I have twitching, too, at times. It has been over 3 years for me and I have learned to deal with it. Nothing that should cause you any additional anxiety.
Be well.
Hi, I am now on week 1 with BP and its awful, does anyone now if the pain (like a bruised sensation to touch on the affected side it normal), does the eye closing or the smile usually start to recover first? im 23 and due to get married in 10 months and as people have said it can take up to a year i am getting pretty anxious about it. is there anything that I can do at home to try to help to process of recovery?
my first bout with Bells Palsy went away in just a few weeks
I was on antibiotics for an upper respiratory infection (supposed cause)
on steroids as well as acyclovir (anti viral med)
please if your Dr has prescribed any medicines
take them as directed rest etc….
the second time 4 years later has me at 8 months without full use of the corner of my mouth but eye now closes with the other
pain can come with this and pain meds help short term
hopefully not much pain with yours
pain lasted about a week or so none first time I had it
good luck it is no fun but eventually heals
MICHELLE, TEN MONTH WILL TAKE CARE OF IT. DONT WORRY. EAT HEALTHY AND GET A LOT OF REST. I WAS FOUND TO BE VERY LOW IN VITAMIN D SO MAKE SURE YOU TAKE VITAMINS TOO. I AM IN MONTH NINE AND I CAN TELL I AM STILL DEALING WITH IT BUT NO ONE ELSE CAN. MY FACE IS ABOUT 1/4″ OFF ON THE RIGHT SIDE. I AM THE ONLY ONE THAT CAN TELL.
I HAD A VERY BAD CASE OF IT. THE PAIN IS PART OF BELLS. I FOUND HEAT WAS COMFORTING AND WHEN THE PAIN WAS VERY, VERY BAD, I WRAPPED A WARM TOWEL AROUND MY NECK AND MOVED AS LITTLE AS POSSIBLE. IT HELPED A LOT. I ONLY TOOK ALEVE AND IT WORKED WELL ENOUGH FOR ME. I HAD SEVERE PAIN FOR THE FIRST MONTH, NOT JUST TO THE TOUCH BUT VERY BAD NERVE PAIN IN GENERAL IN MY NECK. TAKE GOOD CARE OF YOURSELF AND TRY NOT TO WORRY ABOUT IT. IT JUST RUNS ITS COURSE. YOU CAN VIEW PROGRESS VIDEOS ON YOUTUBE IF YOU ARE CURIOUS ABOUT THE PROGRESS OF OTHER PEOPLE. I FOUND IT VERY HELPFUL. ALSO, THE LESS STRESS, THE BETTER.
MICHELLE,
A FEW IMPORTANT THINGS I FORGOT TO TELL YOU. USE LUBRICATING EYE DROPS TWICE A DAY OR MORE. HAVE ONE BOTTLE IN YOUR PURSE AND ONE AT HOME AT ALL TIMES. YOU CAN SERIOUSLY DAMAGE YOUR RETINA IF YOU ALLOW YOUR EYE TO DRY OUT. ALSO IT IS PAINFUL AND YOU WILL HAVE BLURRED VISION IF THE EYE GETS DRY. WEAR SUNGLASSES WHEN DRIVING AND I FOUND A SLEEP MASK AT NIGHT WAS HELPFUL TO KEEP MY EYE CLOSED. I HAD TO USE EYEDROPS CONSTANTLY AT FIRST IF I WENT OUT IN THE SUN OR I WAS DRIVING. ALWAYS CARRY TISSUE, YOUR EYE WILL TEAR AND RUN A LOT. ALSO IF THE PAIN PERSISTS AT NIGHT AND YOU CANT SLEEP IN BED, TRY SLEEPING IN A RECLINER FOR RELIEF. IT WORKED FOR ME. BEST WISHES AS YOU RECOVER.
Thank you very much for all your advice 🙂 this blog seems to be the best thing I have came across as everything else on the internet says the same things and seems to be more doom and gloom and about the fact of it not recovering, I have noticed my eye is a lot better and not as drooped however it still will not close, my cheek and mouth however has not changed a bit although I no its only 1 week ago so I still have a long road to recovery.. the pain is just to touch thankfully it was very painful for 2 days before the BP actually set it tho and was misdiagnosed at first. I am using eye drops a few times daily and have an eye patch for when I am out and for sleeping.. 🙂 thanks again for all your advice makes me feel like it will finally get better xx
You will get better, but it does take time. Meanwhile, take care of yourself and you will see your old self soon enough.
im starting to get severe pain again along my neck, jawline and around my ear, similar to the pain I have 2 days before the paralysis started, im worried its getting worse with this.
can anyone tell me if this is normal or what it means.
Thanks Michelle
The pain is totally normal.
Moist heat works wonders. I still have recurring pain and I still use moist heat. It really helps.
I have had BP twice. The first time my doctor would not acknowledge the pain that accompanies BP and told me to take Advil and Tylenol. That did not help at all and I suffered through the pain.
I am not much for medication; however, with my second bout of BP I went to a different doctor and I asked for a mild painkiller to take as needed. I only took it at night to help me sleep through the pain and that helped to take the edge off enough to allow me to rest and recover.
You have to try what works for you. I strongly suggest the moist heat to start.
Rest assured, the pain is absolutely normal.
YES, THIS IS WHAT DOCS DONT TELL US. BELLS IS VERY PAINFUL. IT ISNT GETTING WORSE, IT IS JUST RUNNING ITS COURSE. I DONT THINK PAIN KILLERS ARE THE ANSWER BUT YOU HAVE TO MAKE THAT CHOICE FOR YOURSELF. I USED HEAT AND WRAPPED A TOWEL AROUND MY NECK TIGHTLY AND DIDNT MOVE BUT I DIDNT HAVE TO GO TO WORK AND MANY PEOPLE DO STILL HAVE TO GO TO WORK. I HAD TO SLEEP IN A RECLINER. THE PAIN GETS WORSE WHEN YOU LAY DOWN IN A BED. ALSO SYMPTOMS COME AND GO. DONT WORRY, THAT IS NORMAL TOO. SOME DAYS I COULD HARDLY TALK, OTHER DAYS I COULDNT SEE OUT OF MY RIGHT EYE AND THEN THERE WERE BETTER DAYS. IT IS A PROCESS OF HEALING THAT IS SLOW. MOST OF US ARE USE TO HEALING MUCH FASTER WHEN WE HAVE A CONDITION OR INJURY. BELLS IS SLOW TO HEAL BUT OUT OF THE BLUE, JUST LIKE IT CAME, YOU WILL BEGIN TO SEE SMALL DEGREES OF HEALING.
thank you so much, its such a horrible thing and im getting myself worked up as I have a wedding in 10 months and need to go dress shopping and cant go into a wedding shop the way I look at the minute. im a student at university at the minute and im off until Monday so im hoping I have a bit of improvement by then. at least I no the pain is normal as it was soo sore for a few days before but then the pain went away again and then back with a bang yesterday, im coping ok without painkillers so far but I will try the moist heat and see. Thanks
Most likely you will be dress shopping with Bell’s but it doesn’t matter. Enjoy this special time in your life. I think most of us avoid mirrors as much as possible in the beginning. Looking at it all the time is discouraging. I found makeup made the Bells look worse. My normal eye looked large and bright and it made the Bells eye look smaller and more crooked. I stopped wearing eye makeup. You can use a brow pencil to make your brows look more even. Your recovery will most likely take months so don’t worry about it now. Stay positive and enjoy your life as much as you can. It will bother you but not others. Most people have known someone with Bells or a friend of a friend has had it. Just remember there is an excellent possibility that it will be very much improved by the time of your wedding. Most likely gone or only noticeable to you. Even photos don’t show the Bells after 9 months and I had a very bad case. It is best to not expect a quick recovery. I had no improvement for the first three month other than the pain subsiding after a month. I was so grateful that the pain was gone, my attitude about Bells improved. The Doctor told me I could recover after 3 weeks. It was the worst thing she could have told me. When I didn’t recover, I was very disappointed. Bells heals slowly but it does heal.
thank you for getting back to me Janel, I would like to ask if you had any face massages or acupuncture as I no a few people who have said it helps. I got a phone call from university this morning as I am a student nurse and there is a chance now I may not be able to graduate with my other class mates due to time being missed.. I want to try anything I can to help with the recovery if there even is anything. from before pictures and right now my face looks a lot better as its not as drooped although the movement still has no improvement :(, Thanks Michelle
hi guys, it is now nearly 4 and a half weeks since I got BP and my eye or mouth wont move any more than it did at the start.. I have had 2 sessions of acupuncture, when should I notice a change.
Thanks
The progress is very, very slow. Don’t worry about the timing. I know it is hard. The less attention you pay to the progress, the better your experience will be. After 3 month of looking for an improvement every day (a few times a day), I gave up looking. I am in month nine and 90% better. There was minor improvement after 3 months. Don’t expect too much and you will be less stressed over it. Stress is not good for Bells. I actually lose ground when I am under severe stress. Have your vitamin D checked just to make sure it isn’t low. Mine was very low when I got Bells. I think vitamin D is important for nerve health. Bells can be very painful. Low vitamin D is suspected in nerve disorders and chronic pain. You can google low vitamin D for more info.
Best of luck to you.
As much as we want to be better quickly, BP sets its own timetable. Janel is right. Stress is definitely not a friend of BP. My first sign of movement did not happen until the 3 month mark. I know that it is frustrating, but it does eventually come back. In the meantime, try to relax and make every effort to take care of yourself.
I am now in final year of university and undertaking the most stressful work we have had to do in order to finish, I hope this doesn’t stop my recovery.
Thank you for your reply
Michelle xx
Good luck with your final year. I make sure that, no matter how busy I get or how stressed I start to feel, I take time to breathe and relax so that I can try to keep myself healthy and keep away BP and the recurring side effects. I set aside certain times each week/month for activities that I know calm me and stick to them religiously. It really makes a difference for me. Knowing that stress is a big trigger for us, it is important that you take good care of yourself during your final year at university.
Michelle,
Just checking in to see how you are. I hope things are better for you. My daughter is in her last few months of getting her Phd in Psychology. She is a psychotherapist. It has been horrible. She has been under so much stress. I have been so worried about her. I pray for her all the time. I hope you are getting better every day. Post your progress. I think it helps others who are newbies. I am in month 11 but I am an older lady so my recovery could be slower because of my age. I suspect so anyway. I still have issues : (
I was just diagnosed 2 weeks ago with Bell’s Palsy….I am trying to cope with all the symptoms, but now I am having alot of neck pain, I want to know if this is part of the Bell’s Palsy?? Some people said yes, but I’m just not sure…
Hi Dorothy. I’m sorry you are in pain. Have you read all of the comments here on this blog? You’ll see that we all have experienced a variety of pain and symptoms, and it is certainly reassuring. My Bell’s started on June 8, 2013, and although I look “fine” I still experience pain/tugging/aches/twitches mostly in my face and jaw, especially when I’m tired. I had neck pain for months, and acupuncture worked for me. I also use moist heat and a homeopathic gel called Arnica (I get it at the health food store). Wishing you well in your recovery.
Doctors neglect to mention the horrible pain with Bells. I don’t know why because if frightens us when it happens. Horrible pain is often a symptom of Bells. It is nerve pain which is a very bad kind of pain. After the pain stops then the face is tender and sore. Kind of like you have been in an accident where you were hit in the face. I am in my 10th month and my face is still tender to the touch. I am 95% recovered. When I chew on my right side, my right eye blinks. I try not to think about how that must look to others. I also still have a little trouble speaking. I cant say certain letters. My face is 1/4″ lower on the Bells side. I don’t think others notice, just me. I am hoping and praying all will be resolved by the one year mark. Best of luck to you. Stress is not good for Bells so take very good of yourself with a good diet, vitamins and relaxation. I am not sure of any connection but I had very low Vit D levels when I got Bells. Low vit D is associated with nerve related conditions so maybe you should ask your Doctor about that.
Janel, I also have a vitamin D deficiency – I am lactose intolerant, and strangely, living in AZ, you’d think I’d get enough sun. My brother, also lactose intolerant and vitamin D deficient, had Bell’s 6 years ago. Obviously this isn’t ‘proof’ of anything, but it sure makes you wonder?
That is interesting. Maybe we are on to something. I put the two together when I read that patients with serious nerve disorders have low vit D. In particular Parkinsons patients have low vit D.
One Year On
I wanted to post my update for all those going through it now to reassure you that it does get better it just takes time. This site was a massive support for me last year.
My face looks 99% normal but the jaw pain and neck pain comes and goes ( I have noticed when I am tired or stressed it seems to hurt more)
Stay away from anxiety and stress and try everything to relax.
I am in month 11. I am 95% recovered but stress does cause a relapse. My face, mouth and eye have a slight droop of 1/4″ that no one else notices, my speech is slightly impaired, when I chew on my right side, my right eye pulls down on the outer edge. I try not to think about what this looks like to other people. I just don’t go there. I read that after one year we are at optimal recovery. I hope that is not true. I never thought that this would take so long. The doctor told me 3 months. I did see videos on youtube where people were telling their story and the whole truth about the pain and the length of time for recovery. My doctor never mentioned the pain and acted like the whole thing was no big deal. I guess because it doesn’t kill us, they don’t take it seriously. Maybe they don’t know the truth. I am grateful for the brave people who tell the truth here. Thank you to all of you.
Janel,
I feel like I could have written your post. It is all too familiar. I am 3½ years out (this time) and I feel like I have less than a 95% recovery. Thankfully no one else seems to notice although I am still self-conscious. I agree that having this as an outlet has been more than a little helpful. Nice to know that I am not alone.
Nina,
So happy to hear that you are well. It does take time and hopefully, one thing that we can all taken away from this, is how we need to relax more.
Thank you for your update.
I am wondering if anyone out there has continued to recover after the one year mark? I am feeling a little down now that I am approaching one year and I do not have full recovery. Thanks
Janel,
I wish I could you that I have progressed, but I do not think that I have. I think, in part, I have learned how to work around some of the deficits so it seems as though they are working a bit better. I have days that are better than others and hours of the day that I can expect not to be as good (evenings). It is 3½ years for me and I still feel different and self-conscious every day but no one seems to notice….which really surprises me. I would imagine that it is the same for you. I would also love to know if anyone has progressed beyond the 1 year mark.
a year later some progress
still have issue with face and mouth
the progress is I can close the eye on my own
I can close my eye with no problem if I am relaxed but I find that I have to strain at other times. Also, when I try to close my eye my mouth moves. I hate that!
I am going on over four years of having BP. Most of it has gone away except that I can’t raise my one eyebrow or raise that corner of my mouth. But there is no droop. Most people who didn’t know me before BP don’t notice. They just assume I am not a big smiler. It’s very disheartening to still have it after all this time. I’ve tried chiropractic, acupuncture, everything and nothing has gotten me to 100%, although acupuncture was the most helpful. I’m currently getting ready to undergo treatment for tmj as I’m reading that some think they can be tied in. Wish you all the best in your recovery. It really does help to know I’m not the only one dealing with this for more than a couple weeks.
Happy to know another longtimer. I have a lot of the after effects and the one that bothers me the most is the synkensis. I am always thinking that people can see the eye/mouth involuntary movements. I also do not have any droop, although when I am tired I think that my eye is not as wide and I know that my speech is not as clear.
What treatment are you undergoing for TMJ? I go to craniosacral therapy on a regular basis which is used for Bells Palsy and TMJ sufferers. I would like to hear how your treatment works for you.
This site is very helpful for all of us. I recently started another site for longtimers. I try not to talk about being a longtimer on this site because I do not want to concern anyone new who has just gotten BP.
bellspalsylongtimer.wordpress.com
I have not heard of anyone who had it for a few weeks but Doctors still tell people this. I think they know what it is with text book knowledge because they don’t seem to give realistic expectations. In the long run, it doesn’t help us to be told it will be gone in 3 months. My condition is tolerable but it isn’t what I was hoping for. I look 5 years older since Bells because I have lost tone in my face. I am in my 50’s so that is very disappointing. Now I realize how good I looked before and I didn’t appreciate it then. I would love to have my pre-Bells face back : (
I could not have explained it better. I feel like I look flat….emotionless.
The first time with BP I had it, start to finish, about 6 weeks. It is possible; however, 19 months later I had it again – opposite side and that, as we know, was not a quick recovery.
This is really a message to everyone. Take vitamin D and have your D level checked. I am hearing more and more that people (myself included) with Bells found out they had low Vitamin D. Maybe this can help people not get it a second time. To everyone with a new case of Bells, research what vitamins assist nerves. Maybe we can avoid getting Bells a second time. Take Care
Sorry I don’t stop by here very often…although I do keep up with reading the conversations. I must say that I have gotten tmj on the Bell’s side ever since I got BP! I hate it….it’s worse when I am stressed or have to talk all day (I’m a teacher, so that is often). Ugh!
Hi Vickie. Good to hear from you. I think that you echo what a lot of us are now dealing with. I have had some mild issues with TMJ, especially in the morning. I can hear my jaw clicking. Ugh is right!
Has anyone out there suffered hearing loss? When I first got Bells, I had very bad ear pain. Also sound disturbances. All sounds were magnified and their was loud swooshing noises with the magnified response to noise. As well high pitched ringing in my ear. I still have the ringing but I am use to it now so it doesn’t bother me as much. I am wondering if the ear ringing will ever go away. I definitely have hearing loss or at least impaired hearing. I can hear words but I cant always make the word out clearly in one ear. As if getting older isn’t bad enough. I feel like Bells has caused premature aging in my case. My face, my speech, my hearing. What an awful condition, however, it doesn’t seem to be thought of as anything serious by the medical community??? I don’t have health insurance. So far, Bells has cost me $4000.00 because they had to rule out a stroke at the ER and follow up care which amounted to no care because there isn’t anything they can do. The medical community in my area, Northern CA, feels like any kind of treatment is a waste of time and money. Without treatment I do have 95% recovery but it is the last 5% that is really bugging me.
The ringing in the ear (tinnitus) is common with BP. Fortunately, I do not have that; however, I do have the problem with sounds being magnified, as well as certain sounds, such as anything metal, sending me over the edge (hyperacusis). I also have the whooshing noise in my ear. I have gotten used to that and only notice it sometimes. I have become adept at putting away pots and pans (and plates) so that the sound of them does not DRIVE ME UP A WALL!!!!!
Hi Janel. I have tinnitus now, and went through acupuncture to try and relieve it. Unfortunately, it did not work. My doctor told me she could refer me to a neurologist, but that I would just come back to her and tell her that nothing could be done. I, too, feel like my hearing comes and goes, especially on my non-Bell’s side.
My Bell’s started on June 8, 2013, and I am 53. My face looks ‘fine’ – no drooping, eyes blink, etc., but I am almost always in some kind of pain – lately, it’s my jaw, which I see isn’t uncommon.
During my well-woman visit last month, the nurse said that since there has been nerve damage, there will probably always be twitches and pain. For some reason, that made me feel better. I am always worrying that I will get Bell’s again.
I’m sorry that we’re all suffering through this, but I’m grateful that you are all here with me. It really does help.
Wishing you well,
Jan
Jan,
It sounds like all of us longtimers are experiencing the same issues. I, too, have recurring pain, but it is usually on the side where I first had BP and fully recovered. My moist heating pad is always at the ready.
Jan, I am so glad you brought up the hearing issues in the non-Bells side. I have hearing problems and ringing in my ear on the side without Bells. I am stumped. Why would that happen? There is no medical information out there about all of these unusual symptoms. I am so sorry you are in pain because next to sciatic pain, the pain from Bells is the worst I have ever felt. I have stated before, I would rather give birth again. Nerve pain is awful. I didn’t take meds for pain but there is Neurontin (not sure of my spelling) I don’t think it is addictive or a narcotic. It is for nerve pain. You could discuss it with your doctor. My personal experience with nerve pain is that it does heal eventually but it is very slow. I have heard that one year isn’t unusual with nerve pain. I am coming up on one year. I am afraid that at that point what I have at that time is permanent. I have to deal with that. It is hard for me because I expected a full recovery. I have a deep faith in God so I am still hopeful. I will keep praying for a full recovery. God bless you.
I’m 25 years old, currently serving in Afghanistan and i was diagnosed with BP 7 days ago. just last night I was woken up by excruciating pain behind my left ear (the affected side) and that pain has still not gone away. From reading all of the responses on here I realize it’s not uncommon, I was just wondering how long or how short some of you experienced that pain? I’m really hoping my face goes back to normal before I return from deployment. I have a little under 2 months left so I’m hoping for the best
Luke,
First I would like to say a big thank you for your service.
The pain is definitely not uncommon. I cannot remember how long the BAD pain lasted. Somehow, we all manage to get through it. I have had BP twice. The first time I managed the pain without any medication and the second time, knowing what to expect, I requested a mild painkiller to help me deal with the pain so that I could sleep at night. There are several different pains that we experience. The nerve pain that radiates from the back of the head around to the ear, the jaw pain and the pain from feeling like someone just bashed you in the face with a baseball bat. Moist heat will help you to deal with the pain.
Wishing you well and a speedy recovery.
Luke,
Your age is on your side! Most of the cases that I have heard of that had a quick recovery were teens and young adults. Even if you had a little left in a few months, most likely it wouldn’t be noticed by others. Now the pain issue, mine was unbearable for 2 weeks then bad for another 2 weeks. Then it was gone and I was left with a tender face. Like I had been beaten with a baseball bat but as long as nothing touched it I was fine. I still have the tenderness. I felt a huge sense of relief when the pain stopped. Try sleeping on your back and propped up if you can. That helped me. I am approaching one year and I still have issues but I really believe with all my heart that your age and general health is in your favor. It doesn’t hurt to pray. God bless you and thank you for your service.
Luke,
I forgot to tell you, YOU MUST KEEP ARTIFICIAL TEAR DROPS IN YOUR AFFECTED EYE 24/7. If your eye dries out your retina can be damaged. You will need a couple bottles. One on your person at all time and one by your sleeping area. A dry eye feels like glass in your eye. Your eyes will run and you will not be able to see. Sun glasses helped me during the day. Also you can try Gabapentin. It is a pain killer for nerve pain. I don’t think it is a narcotic so it should be OK to use daily. God be with you.
Janel
Hi Luke. Thank you for your service!! I’m sorry you have had to join our little ‘club’, but I’m glad you found us! We’re here to support each other, and it’s been a lifesaver for me.
Ironically, I just got back from the doctor for ear pain. Again. I had my BP 9 months ago, and yes, I still have pain – in my ear, in my face, twitches and ‘pulling’ feelings. The good news is that I don’t ‘look’ like I’ve had BP, and I’m O.L.D. – 53 years old. My face started looking better within a couple of months. Please follow the above advice – moist heat, pain meds if you need them, especially to sleep, and take care of your Bell’s eye!
For moist heat, I use a tube sock, filled with rice, and pop it in the microwave for 3 – 3 1/2 minutes. I’m pretty sure you can find the ‘ingredients’ on base.
Best wishes to you, and please keep in touch!
Jan
Luke,
Have not heard from you and wondering about your progress. Are you still in Afghanistan?
Wishing you well and a safe return home.
Hi everyone, thanks for sharing your experiences with Bell’s Palsy. I thought I might as well weigh in with some of my experiences too.
I had my first and so far only episode in the fall of 2010. I was teaching overseas, in South Korea, when it happened. Having no family history or other knowledge of BP I figured I was in for a stroke, I told the director of the school I was working for and was promptly taken to a hospital where they gave me excellent care, prompt and professional. An MRI ruled out any tumours so they then gave me steroids and antiviral/antibiotic medicine along with taping my eye shut at night so as not to have it dry out. The next couple of days I was given massage therapy and electrostimulation. I was discharged from the hospital after five days and back to work after having a weekend off to rest up at home.
It was awkward and extremely frustrating to go through all of this, of course, being in a country foreign to me, so far from my support network of friends and family in Canada. But my school was supportive in getting me to the hospital without delay, and for setting up followup treatment throughout the town I was living and working in, Wonju, Korea. In addition to my hospital stay I received four weeks of acupuncture treatment from a traditional Korean medicine doctor, allowing for me to experience the best of the West and of the East. When I returned to the doctors at the hospital some weeks later for a final inspection they were surprised at how quickly my recovery was going, attributing it to my young age and good health. This may have been a factor but I think credit is due to my health care providers for working so quickly and carefully.
Aside from receiving a lot of care at the hospital and at the acupuncturist, I had a good support network at work and at church. My coworkers and some of my students visited me at the hospital and were quick to help out with filling in classes I was scheduled to teach. The church I was a member of helped to pay for some of the hospital bills, taking some of the stress off of my wallet and my mind. It was still a hard season of life even with this support but I am grateful that God has placed good people and good things in my life in such a troubled time.
Two weeks after my initial affliction with BP I was again able to close my eye on its own (albeit with some conscious strain) and to sort of smile and to chew food again. I don’t remember having much pain but rather just feeling a strong sense of fatigue in my face and neck muscles, a frustration with the situation and for having made so difficult things which I formerly took for granted, and a mind which felt so cluttered and exhausted. Trips out to the grocery store would exhaust me. Trying to read a novel would burn me out. Only a month before BP happened to me I regularly hiked up and down mountains for enjoyment on the weekends, read and traveled extensively, and went out for dinners and drinks with friends and coworkers quite often. Now I had to rest a lot, massage my facial and neck muscles and try not to overdo my efforts to recover my nerve and muscle functions. Looking back on it all I think I was trying to do too much with my time and expected too much of myself before BP struck. I more or less felt like I was back to ‘normal’ in six months, but the whole BP incident was always in the back of my mind.
Three and a half years later, I am back in Canada, working outdoors much of the time, performing physically challenging work and living life a little more slowly than I did in Korea. I used to sleep only seven hours a night but now I aim for eight or nine. I have been getting problems with my rotator cuff in my shoulder from the side that was affected by BP and have been getting massage therapy for it. I was amazed at the tension, the many ‘knots’, that remained in my neck and shoulder from my BP incident so many years ago, as I more or less put that episode behind me and out of mind. I can’t say for sure, but I think that my rotator cuff issues may have their root in unresolved BP neck/shoulder tension and muscle imbalances.
Did anyone else have issues with their shoulder/ rotator cuff as a delayed result of having BP? If so, what did you do about it?
OK, this is ridiculous. My right shoulder is giving me a problem. I have been puzzled by this. RU kidding me? Now I am wondering if it is Bells. It is on the Bells side of my body. I have had Bells for 11 month and I still have minor issues with numbness, drooping, chewing, speech, tender face, ear ringing, hearing problems and now shoulder nerve pain. Nerve pain is different that other types of pain. The shoulder pain is new. Is this a confirmed condition? I have noticed that Canadian Bells patients seem to get comprehensive medical care. Not so in the US. They pat you on the back and say “good luck” I am not exaggerating. I paid $4000 in medical charges for their “best wishes” at my local hospital.
Hello Janel, I haven’t come across any literature supporting the idea that shoulder problems are caused by Bell’s Palsy. That said, last time I wrote I mentioned that I was receiving massage therapy to relieve some of the tension in my neck and shoulder from the BP affected side. Since then I have also been receiving care from a chiropractor. Both the massage therapist and chiropractor have said that there is a muscle imbalance and bone misalignment and that these problems could be residual effects of BP.
We do get some things covered in Canada but we also get long, long wait times for procedures that are covered. My massage therapy and chiropractic appointments are not at all covered but I do not paying for them as they have been extremely helpful. To date I have had two massage therapy sessions ($105.00 for 90 minutes each time) and three chiropractic sessions ($50.00 for the first appointment and $33.00 for each appointment after that) and can say it was money well spent. I perform all of the exercises and stretches they advised me to do and am amazed at how much more range of motion I have than before. My rotator cuff is back to normal, albeit still weak, and my affected shoulder and neck muscles are back in place now too, after having had my shoulder bone (clavicle) adjusted lower and further back. My hip on the unaffected side was out of alignment and was lowered back to where it should be, and my gait, my way of walking, is now back to what it was years ago when I had no foot pain even when hiking the many mountains of Korea on my weekends.
Of particular interest to your case, the chiropractor was able to stop some of the nerve pain I was having in my hand due to a pinched nerve in my shoulder. I used to pinch this nerve when performing an exercise called ‘scaptions’ – basically my thumb and neighbouring fingers would go numb if I held my arm up at a certain angle for too long. That is completely resolved. I am done with my chiropractic appointments but will be going for at least another three sessions of massage therapy to loosen up my neck, shoulder, back, and now my hip to keep muscles loose and limber and to keep my realigned bones in the right place. I am doing a lot of exercises and stretches to improve muscle strength overall and especially to rebalance my muscles – my affected shoulder, upper back, and neck muscles need some work to catch up to the other side. It’s gradual, but improvement is being made. I am learning to relax and go with it for now, even though I would rather not spend the money or time on all of these appointments. I would do them all over again.
I don’t know that massage therapy and chiropractic realignment would necessarily help your case, but I can’t help but think that it could be worth looking into. I hope you can find good help and that things will improve for you.
Dan,
While I cannot imagine what it must have been like to have been so far from home with BP, it sounds like you were in a better place, medically, than any of us. If read any of the past posts, than you know that we have not been impressed with our western doctors/medicine with regard to BP. I have also heard from a few others from Britain who have said the same thing. I think that you were very fortunate to have been treated immediately with Eastern medicine. I just had a conversation last week about so many of turn to Eastern therapies.
As for the rotator cuff issue, I would not be surprised if it stems from BP. One of the side effects is tight muscles and years later I still have issues. I have regular craniosacral appointments and my therapist often helps me with the severe knots and tension that develop in my neck and down my back.
Hello Jami,
It certainly was a trying time of life to go through Bell’s Palsy while away from home but I had a good support network from work, friends, and church. I’ve often wondered how things would have gone for me were BP to happen to me in Canada. We do have a lot of health care resources but they are stretched pretty thin right now with long wait times for just about any procedure, no matter the severity or urgency. The thing I appreciated about Korean healthcare is that though the user has to pay for their healthcare, it is reasonably priced and it is above all else fast, very fast. I was given an MRI, steroids, and antibiotic/antiviral medicine within hours of checking in. I do not have confidence that this would have happened so quickly in Canada. I’d have more money in my pocket when all is said and done but with a delayed diagnosis and treatment I might not have fared so well in my recovery were my BP to happen in Canada.
I certainly appreciated the availability and affordability of Eastern medicine in Korea, too, but have been pleasantly surprised to see a good number of clinics have opened up in many towns in Canada. They are not at all publically funded but they are still reasonably priced for the work that they do. It seems it is taking a long time for patients and for medical practitioners in the West to warm up to the fact that a good number of people have been helped by Eastern medical practitioners and also by chiropractors. I do what I can to spread the word about how I have been helped but I guess some people will only be convinced by peer-reviewed papers…
Dan,
“People will only be convinced by peer-reviewed papers…” or when, unfortunately, they are faced with a situation such as BP, that leads them to investigate and appreciate the healing powers of Eastern medicine.
Hello, I am happy to see these comments regarding bell’s palsy. I was fussing with my husband and started to lose oxygen. I immediately got up and started to get water and fresh air. I felt a stiffness on the right side of my face and about an hour later, my speech changed. I looked in the mirror and cried. IT has been a week now, I have continued to work and I work in the public so it has been hard dealing with people who are trying to figure out if I have a speech impediment or dumb. It is now getting better. I have not fussed, I have let all things that disappoint me go by and it seems to be getting better. Others have told me that rest will help; I plan to get that on Monday. If it helps, I will come on to let you know. THanks to all of you for your stories; they have truly helped.
Rest will help. It is not a cure all, but it will help. When I was in public people asked me if I had had just come from the dentist. I shook my head yes. It was easier for me and probably for them.
Take care of yourself.
Any stressful situation/conflict will cause a setback. Most people know someone that had Bells but yes, they still stare and wonder. I explained at first, then I just ignored it unless my speech was not clear. I am almost at the one year mark and still have speech problems as well as other issues. I am praying for a full recovery. Most people have to keep working which would be so hard. I work from home so I didn’t have to face people but I had to strain to speak clearly over the phone which is stressful and difficult. It can be exhausting. Even over the phone I found myself apologizing for my speech. Everything is better though, not gone but much better. Try to accept what is going on and know that everyday you are moving towards a recovery. It is very slow at first. I am not fully recovered but I am grateful for how far I have come. Most nerve conditions are slow to heal. Be good to yourself, avoid conflict if you can, get rest and do calming things for yourself. I listen to audio books from the library with ear buds or a headset. It is very calming. Reading was difficult for me because of the tearing and horrible dry and painful eye. Try to remember it is a challenge for your family as well. After 6 months I was recovered enough to stop thinking and worrying about it all the time. Give yourself every opportunity to heal. Eat well, sleep and take vitamins, especially Vitamin D. Have your Vit D level checked out by your doctor. Research things that improve nerve conditions. Doctors don’t seem to know much about nutrition and vitamins. My doctors did nothing for me. You didn’t mention pain. If you don’t have horrible pain you are very blessed. Best wishes for your recovery.
Thank you for your best wishes and same to you. I live in California. Not sure about the rest of the country but the treatment and services you are paying for would be 2x or even 3x more expensive here. I think because of lawsuits and insurance costs. Although I have heard there is a cap of $250K on medical mal practice, I guess it is still very expensive for the insurance. As well, student loans are hundreds of thousands of dollars for doctors. Whatever the reason, I am retired and uninsured so it is hard to afford treatment that might help. I suspect it would help me feel better but do little for the Bells. The Bells diagnosis cost me $4000, out of pocket and nothing was done for me other than confirming it was not a stroke. Of course that had to be determined to treat me properly but that did not include an MRI or CAT or anything like that, just an ER exam and 2 follow-up GP appointments. Hard to believe but it is true. Now I can not afford treatments that would help me feel better. Time is free and so far that has been the most helpful with Bells. I am still praying for a complete recovery. Prayer is free too : )
Hello Zethina,
You’re still early in the recovery process so you can expect things to get much better for you in the future. I agree with Jan and Jami about resting and relaxing, that was the best advice I got from my acupuncturist when I had my bout with BP two and a half years ago. I put a lot of projects and hobbies and regular activities on the backburner for a few months while recovering. I learned to get more sleep and to take things a little more slowly and this has stuck with me to this day. I used to try to do five things at once but now I am happy to do one thing at a time. I remember listening to a lot of music while recovering, good relaxing music. Get your B vitamins too.
Hell again, Have had BP for a little over a month now. I’ve gotten a decent amount of movement back on the affected side, but you can still tell when I laugh, smile, blink, etc. was wondering how long it took for you alls eye to go back to normal or did it at all? I’ve been told that I may never be able to close my left eye and keep my right eye open ever again, which would be a career ended for me seeing as how I’m in the military. my smile is slowly coming back, I see more and more teeth everytime I try. I think I will start to get better once I’m out of Afghanistan and not under so much stress all the time. but what I’m really concerned about is the eye, I can close it fully and I can blink it, but it’s extremely slow and noticeable. thanks in advance you all.
Hi Luke! I’m so glad to hear from you again! I was wondering how you were doing. I can’t imagine the stress you are under, and how awful this must be in your situation. It’s been almost a year for me, and just yesterday I was talking with some work friends who said they’d never know I had Bell’s – my face ‘looks’ completely ‘normal’ – as I’ve said before, I’m 53 (almost 54), and I don’t think my case was too severe. Although I couldn’t WINK my left eye in the beginning, I was always able to close it along with my right eye (and needed a little help to close it all the way to sleep). One of my friends that I was talking with yesterday has had it twice – ten years between bouts – and her eye droops a bit, but closes. My brother had a severe case, about 6 years ago, and he still can’t close his eye completely at times. I guess it depends on each individual. My advice is to keep your eye lubricated – my understanding is that the affected eye can be damaged if you aren’t blinking properly. I wish I could tell you what you need to know, but I will tell you that the people I know who have had Bell’s have ALL gotten MUCH better in several months. Please keep in touch, HANG IN THERE!!! and again, thank you for your service.
Jan (from Arizona)
Luke,
Good to hear from you. I have had BP twice. The first time I had total recovery. The second time I have been left with some issues, but no one seems to be able to tell. I think that some of us that are slower to recover, or who have lasting problems are a little older. Hopefully you will be home soon and able to be away from stressful situations, which can be a problem for us. You still need to give your recovery some time and you will find soon enough that your career will be just fine.
Take care, stay safe and thank you for service. Please continue to update us about your recovery.
try to be patient
sometimes full recovery takes a lot of time a couple months to years
my second bout with it is taking over a year non (April 2013 start)
Hi I was diagnosed 7 ddays ago with BP. I am very freaked out deraling with the symtoms of the eye the pain and the tongue. Did anyone experience this?
Hi Jill. Sorry that you have Bell’s 😦 I was diagnosed a year ago, and although you can’t really ‘see’ that I have had it, I still have lingering issues (some mild pain/tingling in my face and yes, my tongue, and I have noticed recently that my affected eyelid is droopy). What is going on with you (more specifically?). I have started taking B12 (under the tongue) to help with the nerve issues, thanks to a good nurse practicioner who seems to know more about Bell’s. I saw an acupuncturist for the face pain months ago, and she was able to really help me. Wishing you a speedy recovery!
Yes, it is terrible but it will pass. It will take time. I experienced those symptoms and way more like ears ringing, a loud swooshing sound in my ear, ear pain, neck pain, numb mouth, drooling and I could not say “P” or “F” and of course the dry eye that feels like ground glass in your eye. KEEP ARTIFICIAL TEARS WITH YOU 24/7. 98 CENTS AT WALMART. Buy a couple bottles. Keep in your desk, your car, your nightstand, your purse. The dry eye is torture without the drops. Wear sunglasses in the sun. If you don’t use the drops you will damage your retina. Take care and hang in there. It will pass with time. How much time varies with every person. It took a year for me and I am still not 100% but I am older. I think young, healthy people heal faster. That is my just my opinion.
Oh I forgot. When the horrible nerve pain stops, your face can be very tender to the touch like you have been beaten about the face. Don’t be concerned. It is just part of the condition. After a year I no longer have that facial pain. However is you get upset about something or very stressed, you can have a set back and the old symptoms can come back for a day or two. Take very good care of yourself. Rest and eat well. None of my doctors gave me accurate information. You can also check out youtube where people have documented their progress. You can get an honest look at the course of Bells. The doctor told me 3 to 6 weeks and it took a year.
thank you so much – I am pretty terrified right now so just reading your words of encouragement is helpful.
The eye pain is due to dry eye. As Janel said, use the lubricating drops/artificial tears as often as you need. You may also experience some blurred vision if you do not keep your eye moist.
Yes, the pain is bad, but you will get through it My first bout of BP I went through it without pain medication and it was not easy. My doctor did not believe the amount of pain that comes with BP so he would not prescribe any meds. My second time with BP another doctor prescribed a mild painkiller when I requested, which I only took to help me sleep. During the day I did not take the pills and relied HEAVILY (both times) on moist heat. Moist heat really helps.
Also, it is good that Janel warned you about the facial soreness after the pain subsides. It feels like you have been hit across the face with a baseball bat. It is all part of the healing process, but you will get through it and we are here until you do. Try to relax and take care of yourself.
MY EYE IS HURTING SO BADLY RIGHT NOIW ITS AS IF THERE IS GLASS IN IT …AND THE PAIN I KEEP EXPERIENCINGAT RANDOM TIMES IN MY EAR AREA AND FACE ARE ALMOST UNBEARABLE I FEEL LIKE REGULAR OVER THE COUNTER PAIN MEDS LIKE ADVILL AND ALEVE JUST ARENT EVEN TOUCHING THIS PAIN — MOST PEOPLE I HEAR TALK TO DO NOT HAVE PAIN? ANYONE?
SERIOUS PAIN IS A PART OF BELLS. YOU MUST PUT THE DROPS IN YOUR EYE AS OFTEN AS YOU ARE ABLE. YOU WILL NEED AN EYE PATCH. THAT SHOULD STOP THE EYE PAIN. WRAP A TOWEL AROUND YOUR NECK AND REST IN A RECLINER. LAYING FLAT IN A BED CAN CAUSE WORSE PAIN WITH SOME PEOPLE. WRAP THE TOWEL VERY TIGHT AND SIT VERY STILL. YOU SHOULD GET RELIEF. THERE IS A DRUG CALLED GABAPENTIN THAT IS FOR NERVE PAIN. TALK TO DOCTOR ABOUT IT. TAKE CARE
I’m so sorry you are in so much pain, but if you read through this blog, you’ll see that many of us have experienced pain, too. Nerve pain just doesn’t seem to respond to Advil or Aleve for many of us. Accupuncture worked for me, and even a year later, I get some pain especially when I’m tired. My nurse practioner said that he has seen patients that had terrible pain, when he just ran a finger down the side of the face where the affected nerve is. Please take care of your eye – Janel gives great advice. My brother had to tape his eye closed and wear a patch for a couple of months; mine wasn’t too bad, I had to close it with my finger to go to sleep, but was always able to blink. I would recommend seeing an optometrist or opthomologist to make sure you aren’t setting yourself up for permanent damage (my doctor had me do that, to make sure). YOU WILL GET BETTER, and stress makes you feel worse. Please keep in touch.
I am really atumped because my regular Dr. and 2 Neurologists seem to have difference of opion. The palsy started during a herpes simplex 1, sores in mouth. I started with funny feeling in nose that traveled into eye. For only a few days did I have behind ear pain. My face goes down on one side then hit of both sides! Had MRI of brain and it shoes trigeminal nerve problems, which I had gamma knife radiated I have horrible facial pain and problems keeping one eye open. Was on acyclovir and now vacyclover. Heavy pain meds. Trigeminal nerve inflamation in face. Just like the old days. Possible radiation again. Again, palsy pain since begininning of August. No my smile is not so hot either. How long does this last. Are there excercises I can do. Also can’t stay on pain meds all the time. I can’t drive. If you have answers or ides I would be so happy to hear them
Hi Trish.
So sorry to hear of all that you are going through. I myself have had my second bout for just over two years. I finally got rid of most of the pain through a hypnotherapy session.
Only two weeks ago I had my first session with acupuncture. At first I thought it hadn’t done anything but I realised a few days ago that I finally had lost the weakness in my right eye. He also gave me exercises to do and I go back for another session next week.
If I see that this gets through to you, I will then send you the exercises that he gave me.
Please make sure you keep your eyes lubricated and wear sunnies anytime you are outside.
I’ve had it for my second time
Started April 2013
Still have partial paralysis
No whistle, still need a straw for drinking
Patience sigh
Neurologist said can take up to five years
Can have some permanent issues
3 weeks in BP and the base of skull/ neck pain on affected side is terrible, just started a few days ago.
I see quite a few people reporting the same. Of course, I am getting concerned about the pain and considering an MRI.
Have many of you gotten MRIs.. ?
I’ve had a complete with contrast etc brain MRI and still no miracle cure
Neurologist was surprised I was even sent for one
Everyone is different
Sometimes takes weeks to go away
Sometimes much longer up to five years
Try to stay positive my lingering facial paralysis is a lot better than first few days
But a year and a half later still not fully back
My second time having it on other side last time
First time fully healed, even had my whistle back
Three and a half years later was second bout
Still drinking my liquids through a straw
THE WORST OF THE PAIN LEFT AFTER 4 WEEKS. I WAS SO GRATEFUL, I DIDNT CARE WHAT I LOOKED LIKE AFTER THAT
HAVE YOU HAD YOUR VITIMIN D LEVEL CHECKED. IF NOT DO SO OR JUST TAKE IT ON YOUR OWN. MY DOCTOR (A FEMALE) SAYS IT IS EXTREMELY COMMON, ESPECIALLY IN HER FEMALE PATIENTS. THEY ARE AVOIDING THE SUN IN ORDER TO PROTECT THEIR SKIN.
No MRI here. I went to the ER. I was seen for 5 minutes and sent home with a $4000 bill. No meds, nothing but the wrong information. I was told I would recover in 3 weeks to 3 month max. It was one year and I only recovered 95%. Everything I know I found out here! I know it is no comfort to you now but the pain will go away. Stabilize your neck with a firmly wrapped towel or cervical collar from the pharmacy. I could not sleep lying down. I had to sleep in a recliner to be pain free. Get a lot of rest. Eat well. Avoid stress as much as possible. Even now, after 16 months, if I get stressed out, I have a set back. I start to slur. I did not get a full recovery but I am middle aged. Maybe that is why. KEEP EYE DROPS IN YOUR EYE 24/7. You have to have the eye lubricant with you at all times. I slept with a sleep mast to keep my eye covered. Take was tearing out my eyelashes. I have heard there are pain meds for nerve pain. I think it is called Neuronton. Ask your doctor about it. You should take vitamin D3 if you are not taking it now. I am pretty sure that is why I got Bells in the first place. My vitamin D was very low at the time. Low vitamin D is suspected in several nerve disorders. Try not to look at it or dwell on it. I know it is hard but it will not help. Try to get back into your normal routine and ignore it and ignore how people look at you as well. Best of luck with it. There is a very good chance your case will recover faster and better than mine. Here are the possible symptoms of Bells so you are not concerned. Doctors would never mention these. I really don’t think they know that much about it. They give pat answers. EAR PAIN, EAR RINGING IN BOTH EARS, SLURRING, DROOLING, DRY PAINFUL EYE, NECK PAIN, PAINFUL MUSCLE SPASMS IN THE FACE AND JAW, FACIAL PAIN, NOT ABLE TO BLINK, SWOOSHING SOUND IN YOUR EARS EVEN ON THE OPPOSITE SIDE, LATER SYMPTOMS CAN INCLUDE SHOULDER PAIN AND OTHER TYPES OF NERVE PAIN, NUMB TONGUE (MY TONGUE ITCHED ON THE BELLS SIDE THE DAY BEFORE I GOT THE BELLS. I ALSO HAD ITCHING IN MY EAR,
OH, I FORGOT. BLURRED VISION AND LIGHT SENSITIVITY SO TAKE SUNGLASSES IF YOU GO OUTSIDE. A MUST OR YOU CAN NOT DRIVE. IT WAS LIKE TORTURE FOR ME. THE SUNLIGHT CAUSED EYE PAIN AND A HEADACHE. ALSO DONT TAPE YOUR EYE SHUT AT NIGHT, IT WILL RIP OUT YOUR LASHES WHEN YOU REMOVE IT.
I did not have an MRI. My first time with BP I went to the ER and I was given a CAT scan to rule out potential causes. They also did blood work. When all tests ruled out more serious triggers it was determined that, like most of us, BP just happened and most likely from stress. I was sent home with steroids, antivirals and a lack of knowledge. Doctors do not know much about BP. We educate ourselves and are able to pass on what we know to newcomers.
The pain, unfortunately, is normal and will get better. It really will! My first time with BP my doctor would not provide pain killers. I do not think he knew about the pain. He told me to alternate between Tylenol and Advil. That did not help and I had to manage through the pain. My second time with BP I saw a different doctor who was fine with writing me a prescription for a mild painkiller to take as needed. I used it only at night to help me sleep. As you know, sleep is difficult due to the pain. During the day I worked through the pain. I did not want to take too many painkillers. Has the soreness settled in yet? After the main nerve pain you might experience feeling like you have been hit in the face with a baseball bat. If that occurs, that TOO is normal.
We have all been through this and we can assure you that the pain is totally normal and will get better.
I hope that hearing the same information from others with BP will give you some peace. It is so important to not be stressed. That will only make you feel worse. We all know the pain and discomfort, as well as not knowing much about what is happening, but we can all assure you that you will get better. You need to give it time and, in the meantime, we are all here to answer your questions and help you through your recovery.
Take care.
Thanks so much! It really does help a lot to hear from all of you. I have been freaking myself out a bit.
I basically talk for a living in sales management so it sucks that after 15 minutes I really start to slur and mumble. Considering some of the much more serious issues these symptoms could be from, BP is relatively not that bad.
It has got me to pay more attention to slowing down my speech, and avoiding stress triggers, and forcing myself to relax a bit. So if I can find a silver lining, slowing my type A self down a bit may not hurt.
You sound much more relaxed now. I am happy that we were able to help. You are only 3 weeks in so give it some time. Relax, rest and take care of yourself and you will start seeing more improvements. It may take some time, but you will get better.
Bells recovery is slow but sure. No sense in even looking for improvement on a daily basis. It is a very slow process as is any nerve condition. When I had my wisdom teeth removed, my chin was numb for 2 years but it did heal eventually. So when I began my journey in healing from Bells, I kept reminding myself of that. This is not something that will show improvement over night. Don’t even bother looking for it. In the beginning I looked for improvement every morning. It was not good for me and it was very discouraging. When I stopped looking, I felt better and I believe I started healing. I don’t know why but stress and Bells are closely related. It causes stress to keep expecting a quick recovery and not getting it. Let go of expectations, take the best care of yourself as you can. Eat healthy, drink water, get enough sleep and take vitamins. Resume your regular life as soon as you can. I felt that if I allowed myself to dwell on it and worry, my recovery slowed down. DONT LET BELLS STEAL YOUR JOY, YOUR PEACE OR YOUR LIFE. KEEP LIVING YOUR NORMAL LIFE IN SPITE OF IT. Of course you can not do this until you are past the pain stage but after the pain goes away, start living your life again. Check out Youtube. There are many people who post their progress with Bells. They have a lot of good advice that I found helpful. It was also a reality check for me regarding my expectations. I did not see any major improvement for 6 months but everyone is different. Like I mentioned before, I think older people heal more slowly. That is just my opinion.
Regarding a second bout with Bells, please have your vitamin D level checked by your doctor. Vitamin D is essential for nerve health. Vitamin D levels are being researched in diseases like MS, Bells, Parkinson’s and other serious nerve disorders.
I am 36 weeks pregnant and on day 9 of BP. I feel like the pain is getting worse. I finished a 7 day round of prednisone and antiviral 2 days ago. I lay my face on heating pad, somewhat helps. The pain goes all the way to the back of my head and down my neck. I hate that i can not take anything for pain, it has kept me in bed all day. It makes me feel like a terrible mother to my 6 year old. The paralysis sucks, but the pain is just awful. Im glad I found this site, its relieving to read others stories.
I am glad that you found us and that we are able to provide some relief for you. Third trimester is one of the triggers of BP. Are you using moist heat? Heat is nice, but moist heat is so much better. I am sorry that you are unable to take any medicine for the pain. I managed to get through my first bout of BP without any pain meds. It was not easy, but the pain does go away. If rest helps you get through the day than you should not feel bad about it. I understand that you feel bad about not being a good mother to your 6-year-old, but you need to take care of yourself right now so that you can heal faster.
Take care.
Alyssa, as with all nerve pain, being completely still should help. I know that is almost impossible as a mom. If you can, get some family help. It is a temporary situation. It will pass. Let family and friends know you need help. Reaching out is important. Rest is the best thing for you right now. So sorry about the timing. As if being a mom and pregnant isn’t enough. I didn’t take pain meds either with Bells. It doesn’t really help. Just rest, heat and being very still helps. Wrap a towel around your neck over the heating pad to hold it firmly so you don’t move your neck. Sleep as much as you can and wherever you are comfortable. Laying in a bed was very painful for me. I could not lay flat for a month. It is hard sometimes to get the support you need because for some reason no one realizes how painful Bells is. Everyone thinks it is just the facial drooping. That is the least of it but no one other than other Bells sufferers know how horrible the pain is. Doctors know very little and don’t prepare us for the worst of it. I hope you can get the support you need right now. Don’t forget the artificial tears. They will protect your eye from a torn retina. The eye symptoms are painful too so use the drops as needed all day. Wear a sleep mask at night to protect your eye from debris and keep it from drying out which will damage your retina as well. Some other symptoms you may experience as time goes by are ringing in the ears, sensitivity to noise and light. Wear sunglasses outside. The sunlight can be very painful and it made my eyes tear so badly that I could not drive or see. After the pain stops, you may feel like you have been beaten. As if your face is bruised. It can be tender and painful if you touch it. That will pass eventually too. Doctors never mention any of this and act as if they have never even heard of these symptoms. I guess because Bells is not fatal, they dont study much about it. Take good care of yourself
Has anyone gotten BP after having the shingles vaccine? I got BP about a month after the vaccine. Also, was going to a chiropractor and had my face pushed into the cushions on his table for 30 minutes each visit. Could this have aggravated the nerve canal?
After my second BP occurrence, the physician told me never to get a flu vaccine as it could trigger another onset of BP. If this is indeed a likelihood, then I would imagine that the shingles vaccine could have had the same effect. As for the chiropractor visit, I doubt that was an issue.
After three weeks, about 90 percent of symptoms have gone away. started to feel changes at end of week two. still a little weakness in lips and stil have pain around ear area. I am very fortunate to see such improvement.
You are very fortunate. Sounds like you are having a fast and full recovery. Take care.
Gerry, you have no idea how lucky you are. This is the Bells experience the ER doc explained to me but not what happened. It was months of horrible pain, hearing issues, face pain. I could go on but I wont. Almost two years later, I still have minor issues like when I eat, my right eye blinks and some numbness and slight eye drooping. Count your lucky stars my friend. Good to hear of your quick recovery. Still take Vit D3 and use lubricant eye drops so you dont damage your eye just to be on the safe side. Best wishes
I suspected that my case was not too severe at the start because i had minimal face drooping but I was still concerned nonetheless especially after reading through this blog. I no longer need eyedrops and can fully blink. my doctor said the remaining recovery would be slow over several weeks. best of luck to all BP sufferers and full recovery. thanks for all the important information provided here.
Gerry, I am happy to hear that your case is mild. That is what most docs tell patients but that isn’t usually what happens so it is discouraging for most of us. Wish it was that way for all of the people who post here. Ask for a Vit D level from your doc though so you don’t get it again. Many people do get it again on the other side and sometimes the second episode is worse than the first. I know I got it from low Vit D. That was my only abnormal blood result and I have read up on it. Low Vit D is being linked to several serious nerve disorders. I don’t think pressure on the face can cause it but who knows. I know that pressure hurts like crazy once you have it. I tell everyone I can to talk to their doc about it. I am still healing and I want people to know that. Almost two years later I still get mild stages of improvement so I am very grateful. I am praying for a complete recovery for myself. Sounds like you are doing great : )
I have just been diagnosed with BP 2 days ago. I’m a generally healthy, 25yr old female. This is my first occurrence and I had no idea until now, that you could even get something like this. Like most, I originally attributed it to other things; we thought it was a tooth infection/wisdom tooth coming through..!
It started with a very tight/uncomfortable feeling in the back right-side of my neck on the evening. The next morning, the right side of my jaw/tooth/behind ear/neck area was excruciatingly painful. There was also swelling, and I panicked that maybe I had a bad tooth infection. By that evening, I couldn’t move the right side of my lips and my face was tight. I slept it off thinking it was just a trapped nerve. The next day my whole right side of the face couldn’t move, from my forehead to my lip. I immediately went to A&E (the ER for you American’s!) and they were fantastic. I saw a GP, Consultant and specialist ER consultant, who ruled out anything serious like a stroke. They told me being stressed, run down and unwell had given me viral BP. I was sent home with 7 days of antibiotics (co-amoxiclav) and steroids (Prednisolone)
Today is day 4, and there’s no real improvement (as to be expected) but i’m keeping very positive, taking my meds, and getting plenty of rest. Just to reassure those new people who have BP and are anxious, ALL of the below symptoms i’ve had, are completely NORMAL:
– Jaw/tooth/ear/face/head/migraine/headache/neck/shoulder pain
– Muscle cramping/twitching/pain/tightness in the face and neck
– Dry/sore/painful/twitching/watery/ eye – you may be able to blink or not
– Sensitivity to sound/loud noises/bright lights
– Tiredness/depression/anxiety/loss of concentration/clumsy/confusion
I just wanted to say a HUGE THANKYOU, to everyone on here who has reassured me so much just by reading your accounts. I will check back on here soon, and see if anyone else still updates on here. I’m a singer and joining a new singing group on September 7th, so i’m PRAYING that i’ll be on some road to recovery by then.
Stay positive all, sending love and hugs 🙂
Nadine
xx
Hi Nadine, I think I have a bit of good news for you. From what I have seen, the younger the person is that has Bells, the better they do. Not always but usually. So, hang in there. It is a longer haul than doctors tell us but improvement will SLOWLY come. Some recover slower than others. I am out 3 years and. am recovered around 90. I have read that what I have now will probably be for good but I am still praying for more recovery. I have very bad pain when I open my mouth and I get very painful spasms in my face on the Bells side but I am grateful for the recover I have. I am certain you will completely recover. It will be at least 6 weeks, more likely a number of months for a complete recovery. Check your Vitamin D levels. It is essential for nerve healing and may be a factor in Bells. Also Bells is associated with Lyme disease so if you don’t recover in a reasonable amount of time you can have that checked out. I have a few suggestions that really helped me. Keep lubricating eye drops with you always, by your bed, at work, at home and in your handbag. Your retina can be damaged if it allowed to dry out. Always wear sunglasses outside. I could not see to drive without them. I used a sleep mask to protect my eye while sleeping. It works great. I have a very soft padded satin mask. Take Vitamin D, get a lot of rest and avoid stress. Stress causes set backs. For neck pain try a warm towel or heating pad wrapped in a towel. Wrap it firmly around your neck like a neck brace. It soothes the nerves. Also it isn’t unusual to have hearing problems. Ear pain and ringing is common, I still have it. I am use to it now but at first it is disturbing and there can be swooshing sounds as well. Noise can be very exaggerated to the point of painful. Doctors in the US have limited information about Bells. I was told I would recover in 2 weeks. I wasn’t given any medication. In general, take good care of yourself. Best wishes.
Nadine,
I just read Janel’s response and I really have nothing different to add. I agree with everything that she said. Janel and I are both long-timers, but please assured that it is not the norm and we are also older than you. I have had BP twice. The first time I recovered completely within the average 6 week mark. I am now 5 years into my second bout and I have not fully recovered, although I do see slight improvements every now and then.
Definitely find yourself a moist heating pad or use a warm wet cloth. It really will help make a difference. The pain can be awful and doctors, not knowing much about BP, are hesitant to prescribe pain killers – at least mine was. Trying to manage the pain on Tylenol and Advil was not easy and I am not one to ask for strong drugs. After the onset of my second round of BP an educated ER physician was more than willing to prescribe a mild painkiller and it really helped to take the edge off the pain so that I could manage some needed sleep.
I used disposable eye patches and the adhesive bothered my skin. I wish that, at the time, I had thought of used the padded eye mask like Janel, but you do need to do something to protect you eye. Very important! Even your pillowcase could scratch your eye.
Even though Janel touched on all the important parts, I though it might be helpful to hear from someone else that what you are experiencing is normal for BP and you will be fine.
Take a deep breath and try not to get too stressed. Stress is terrible for BP. Relax and try to pamper yourself. Really, you will be fine.
Jami
This is THE first blog/site/info on BP that I’ve found that describes my pain. I am on day 11 of BP. I’ve never had it before. The Prednisone helped at first but I noticed the nerve pain as I tapered off the prednisone. The entire left side of my face feels bruised. Very sensitive if I touch it. I’ve told people I feel like I got hit in the face with a 2×4. The burning pain in my jaw is horrible. No OTC meds were working so I started taking my sons leftover Percocet from his wisdom teeth removal. It just took the edge off. I have missed several days of work due to the pain. I can’t think straight and just want to make the pain go away. Went to doc yesterday and she put me on neurontin. Thankfully it’s the weekend so I can figure out what dose will work. I can deal with the crooked face but not the pain. I am starting to be able to move my mouth a little more. I still can’t eat on the left side because I can’t seem to control the chewing or even get my tongue over there. My eye is still not closing all the way. It feels as if it’s been open for days. I gave up on taping it shut while I sleep. The tape doesn’t keep it closed and the tape irritates my skin. Anyways, that’s my story. Glad to find this blog.
Hi Vickie, I am wondering how your neck is doing?? I know it has been a while since your blog about BP Being a Pain in the Neck but it has been the ONLY thing I could even find that was related to BP and neck pain. My doctor and a chiropractor both said they certainly “understood” how BP could cause stress which could in turn translate into neck pain. In my opinion, the neck pain is a lasting result of BP since it is on the same side (left) and it came just days after the facial paralysis. They really do not hear what I am saying. The BP occurred at the end of May of this year and the neck pain is awful–some days completely intolerable and other days not so bad but it is always present to some degree. I wonder if this is a forever thing since it has been 3 1/2 months. The facial things were better in 10 days so I could not complain about that. Any light you can shed on this would be appreciated. Hope that you are doing well.
Susan,
I am not sure if Vickie still posts. The pain is not abnormal. We all heal at different rates and there are still days that the pain revisits. I used to have a tough time with the ear and jaw pain. It has great lessened over time. I do not know how old you are, but it seems to take longer with older sufferers. The doctors really not hearing what you are saying is also not abnormal as most of us have discovered. With the exception of one gentleman who woke up with BP while he was working in South Korea, our medical professionals are not well acquainted with BP. Dan, who was in South Korea, was immediately treated with Eastern and Western medicine and his recovery was swift. Too bad our doctors do not prescribe to the same protocol. We would all probably heal a lot faster.
The pain should lessen in time. Meanwhile, try moist heat. It really helps.
Jami
This blog is amazing. It has really put my mind at ease.
This is my second time with BP the first was about 9 years ago and only lasted 8 weeks but I had no pain at all. This time it is completely different. I am just over two weeks and the neck pain (at base of skull) is horrid. I have the tiniest of movement back in my eye but still cant blink or move mouth. I had severe “hit in the face with a baseball bat” tenderness but that seems to be easing.
I have just started managing a remote motel and the stress is quite high, unfortunately there is not much I can do about that. I went to the GP today and he wanted to send me for a CT (he could not tell me anything about BP or offer any assurance) The nearest CT is a 4 hour round trip and will cost me $600.
I am going to try the hot compress tonight and even sleep a little elevated. I have not slept well in over two weeks which probably is not helping at all.
Thank you all for your advice, it really is so good to finally find out some info.
Chloe
Chloe,
Sorry to hear that you have BP again and that it hit you harder this time.
It sounds like you have hit all the same obstacles with the medical profession and their lack of BP knowledge. We can all totally empathize with you.
If the “hit in the face with a baseball bat” tenderness is beginning to ease, it sounds like you are on your way to recovering. DEFINITELY try the moist heat compress. It will make a world of difference and help you with the pain and tenderness.
Wishing you a speedy recovery.
Take care,
Jami
Thank you for your kind words! Just comforting to know I am not alone.
Thanks
Chloe
Chloe,
You are, most definitely, not alone.
Jami
Chloe
I had Bell’s palsy over 2 years ago and I still get that awful pain in the back of my skull & shoulder. I get the pain in my face too, like someone has hit me in the face with a baseball bat.
I have big flare ups all the time and now I have to take gabapentin for the nerve pain.
I use heat too, stress makes it worse.
My doctors are useless , but this site is really helpful and other peoples good advice .
I have been told it can take 2 years for bells palsy to totally go but I am now over 2 years ,
I had a car accident and they say the stress, upset and my body being run down caused Bell’s palsy .
I am starting yoga as good for distressing
Good luck and hope you recover x
Oh the pain is horrid at the back of my neck especially at night. I am going to see if I can get some stronger pain killers so I can sleep!
My body has never reacted well to stress so am looking into things like yoga and meditation.
Good luck for the future and thank you for your lovely words xx
For stress relief, I have cranio-sacral therapy (CST) massages on a regular basis, which is recommended for BP sufferers. I have seen some slight improvement since beginning my CST sessions years ago. If nothing else, it is sooooooo relaxing and I feel as though it helps tempers any stress that I may be experiencing.
Thanks for the tip. I will be definitely look into that! Anything that helps a little is worth it I think.
🙂
I haven’t gotten to read all of the posts here, but is is nice to know we’re not alone…I’m less than a week in, and I’m praying every day to be able to smile again. It’s just disheartening and annoying. 😦 It sounds like so many don’t have a full recovery. I’m hoping for that for all of you, and me! We can at least hope!
Thank you for all the advice!
Lori,
Do not be disheartened. You will get better. It just takes time and most BP sufferers do recover. The “longtimers” are NOT the norm. I have had it twice. The first time I had it, start to finish, for six weeks with a total recovery.
Don’t know if anyone is still here, but my face feels bruised, is this a good sign?
Bruised? Feeling like you were just smacked across the face with a baseball bet? Oh yes, absolutely normal! That “soreness” usually kicks in as the other pain starts to ease. It is a sign that you are progressing as you should.
Hi Della, personally I feel that youth means a lot in the healing process for Bells. I was 57 when I came down with Bells 3 years ago, I did not get full recovery. 90% but I have facial nerve damage so the right side of my face looks 10 years older than the left. Also my eye blinks when I chew and I get muscle spasms that are very painful in my jaw and chin. It seems to me that the younger you are the faster you heal and better recovery out come. Just my opinion.
Make sure you buy eye lubricant. I bought it at Walmart for 89cents. Blinking isn’t enough until you are completely recovered. Keep it with you at all times. One at home and one in your handbag. You can damage your retina if your eye gets dry. For some reason doctors don’t tell patients the entire truth. I am not sure they even know the entire truth. I was mismanaged and have paid a price for my ignorance. I could have gotten a better result if I had known more.
Look in to physical therapy and acupressure.
Yes, what Jami said 🙂 That’s exactly what I said about mine at that point also.
I’ve had it since November 17, 2015. I’m just now starting to get a partial smile on that side. My EYE!!! Is the most annoying thing EVER!!
Make sure to keep lubricant in your eye 24/7 and wear a sleep mask at night. Keep the lubricant with you at all times. Serious damage to your eye can occur if you let your eye get dry.
Thank you! Yes, I do keep drops in it a lot. I can’t stand the watering and blurred vision
I think I have a bottle of drops everywhere now! 🙂