Wednesday, March 9, 2011

Bells Palsy Update - it will be 7 years in May


Like many of us with residual BP when possible I prefer to wear my sunglasses when possible



I am really happy to have to have as much of my face back as I do,they said I would never recover.I still try not to smile too big when taking photos, because when I do my face is still a little cock-eyed.

The doctors wanted to put a gold weight into my eye-lid, but I thought - they just don't know me very well and I did not accept their opinion. I did go through a lot of acupuncture with electrical stimulation, PT with electrical stimulation and macro electrical stimulation. I have also been seeing an osteopath (something I never believed in before) but to my shock when he started to work on my face - I had NO idea of how much pain I was still in, until he touched certain areas of my jaw and neck. It would be similar to someone having a tight muscle in your back and having someone massaging it to work it out. Now it feels similar to the other side but it still pulls in areas of my neck and eye.

I haven't had any therapy for about 2 months and nothing seems to be improving any longer. I might try a little more but I know that I have pushed my recovery to the limit. They say your going to get as much back by about 2 1/2 years but I am here to tell you my recovery has been ongoing until now slow but steady, so don't believe everything they say but you must take control and get some sort of electrical stimulation.

132 comments:

  1. I have had bells palsy for 4 years and 2 months. My smile is one sided and my eye looks smaller and closes when I eat and open my mouth and smile. I'm finally going to get some help with my eye. I'm going to have my eyebrow raised so my eye will open more. When I see a camera I run the other way.

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  2. I understand and feel the same way. I keep hoping things can change but as time goes by it seems very unlikely. It is much better than what the doctors ever told me to expect, but it is like you said, I am not too fond of photos and try to think of how to smile so it doesn't look too weird in pictures.

    It sounds interesting about the surgery - keep me posted.

    At least my face doesn't feel like it pulls as bad but maybe I am just getting more use to it. Thank you for your comment :) Birgit

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  3. I had Bell's Palsy back in 1996 and it took years over 10 to finally get use to not trying to do with my face what I did before BP. Then I was prescribed prednisone (steriod) to get the feeling and movement back in my right side. It worked but I gained weight. I had a severve case. Now I'm able to smile with my mouth closed, because I don't have that fantastic broad smile I was trademarked for in my younger days. I don't look too much like I'm sneering at someone anymore. That brought a lot of negative attention from other people. But my Cleft has move under my chin to the left, not centered. Boy there were a lot of things that hit mentally dealing with BP, because a lot of people don't know about the affliction, so you feel alone. It takes a strong person to push through, so to all be strong and be blessed it wasn't a stroke. Darren

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    1. hi after 10 years you were prescribed prednisone?

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    2. plzzz guide me.. i am very depressed about my face

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    3. not for the first week but my pain was so great when I finally saw a neurologist she did prescribe prednisone for about 15 days

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    4. If you just got BP for good measure you could try acupuncture and acupuncture with electrical stimulation. when looking for an acupuncturist ask how many BP patients they have treated before and are they familiar with treating it

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    5. hi after 10 years you were prescribed prednisone?

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    6. thank u Birgit.... but you got recovery by using prednisone or not? and how much time it take u to get recovery?

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    7. and how much electrical stimulation takes to gaive you recovery?

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  4. Hi Darren I completely understand. I still have a slight sneer, cleft to the left, and am very aware of not smiling as big as I use to – it now looks like a forced smile, since my left eye now get smaller when I smile. I use to try to explain to the younger children in the family why I looked this way and to not be afraid. My face is much better now after LOTS of electrical treatment through acupuncture and macro stem, and most people won’t even know since they have nothing to camper it to, but I know. Yes your right we were really lucky that it wasn't a stroke. I did have someone in one of my workshops have a stroke once and I could recognize right away as not BP - it was different. At that moment it brought up so many feelings of what I went through that I guess I never processed and it was hard to stay composed but I did what had to be done. Wishing you all the best Birgit ☺

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  5. I have had Bells Palsy for a little over two years. My eye is smaller than the other and when I eat I can feel my eye getting smaller as I chew or even drink. I still get cramps on the side of the face when I smile or laugh at most times not all which at times its painful.I can see swelling under my eye. Went to see Neurologist and he says I look good and I have recovered 90% which I might stay with the 10%. I don't feel beautiful anymore and hate looking at myself in the mirror. Have been trying to take herbs as far as Vitamins but just started. Wish it would go away so I can get my life back.

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    1. Dear Cindy
      I understand, it happened to me in 2017 and it is now 2012. I still feel a tightness in the muscles / nerves around my eye but it is much less then it was. I don’t have really any pain any longer only tightness, but the tightness is not as bad as it was.

      My left eye looks normal if I don’t talk or laugh (but that’s not me) and when I really get animated my affect side gets much smaller. So I am still conscious of trying to stay aware and control or exercise that side of my face, in our case only time can heal or at least try.

      I really don’t like pictures of myself because my eye is smaller. No one else really notices only me, especially in pictures. I consciously try to pose my good side to the camera then the perspective looks much better.

      I found that even after 2 years I was able to get more recovery back. What really helped me in my recovery was acupuncture with electrical stimulation attached to the needles and macro electrical stimulation (different technique). I had to stop due to the expense of treatment for my Lyme disease but even now after 5 years later I am considering doing more treatment again. The nerves grow so slowly that I would like to think that given time, facial exercises and stimulation almost anything is possible.

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    2. hello everybody i'm Gilbert Navarro it's been going 5 years already with the palsy tryed everything vitamins facial rubs electrical stimulation acupuncture herbs recovery has come back some what doctors tell me the older a person is the less you have in getting better it sure has change my attitude can's seem to look at people in the face during a conversation you won't know that i have it until i start to talk or smile.i just hated good look to the rest of us it's here to stay.

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    3. I contracted Bell's Palsy 31 years ago when I was pregnant with my son. Everyone still notices my affected eye and my mouth. If I rub the Bell's Palsy eye in the morning, the pain of the rubbing is intense, so I have to remember not to touch that eye. I think I will always have the weakened mouth and eye. My son is getting married in a few months, and I do so dread those wedding photos. Guess some of us are just stuck with the problem.

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    4. I'm sure you will still look beautiful in the pics, turn the good side to the camera and when outside wear some sexy sunglasses :)

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    5. Hi All,
      I got BP almost 3 years ago. I find botox is helpful with the involuntary move of the eye when smiling or eating. It also helps with the half smile and making your face looking more symmetrical. I understand that not everyone might want to get botox for various reasons, but it has been beneficial to me.

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  6. I developed Bells pasly about a month before my prom and high school graduation. I had to tape my left eye shut at night for 6 months so it would not dry out. Im now 22 years old and still have it. It did get better for awhile but has stopped. I do not let people take pictures of me, because it seriously depresses me to see them. I know i need to just get over it but it is very hard to do so. My left eye waters when i eat which is weird, when i smile it gets smaller, and i cannot raise my left eye brow. When i massage my face there is pain still. I have no insurance and no means to get any. I literally do not know where to go from here. Its awful to be in "your prime" and unable to do so. I do not feel pretty at all, and it hits the self esteem hard! -kristen

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    1. Dear Kristen I absolutely can completely sympathize with you. In general I feel pretty good about things until I have to have a photo taken or see a picture of myself then I can get a little depressed and sad and wish it was different. It hurts when people say you used to be so beautiful and now they leave the rest to my imagination of what they think. In general I'm a very happy and positive person so I try my best not to let it bother me, But there is always a small part of me that it does.
      When it happened it gave me a greater perspective of anyone that had a problem looking at me it was not my problem but theirs.
      Most people when they meet me can't even tell that there really is a problem because they have never seen me before, so they think this is what I supposed to look like. The people that really recognize what it is are doctors or people that experience the same thing.
      I have learned when having pictures taken the way that I don't mind to see myself is to have my good side of my face facing towards the camera on the other side slightly turned in and the picture seem to be fine. I was hoping maybe to have a little more acupuncture or some type of electrical therapy but at this point I really don't think it's going to help anymore. I often think that really in the bigger picture I'm very fortunate to have what I have, and it could always have been much worse and it was. I wish you all the best and much happiness and as I said I understand

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    2. I wish I could share pictures here. I have had BP for 29 years. It was Wednesday February 29, 1984 when I woke up with it. I had my baby girl 2 am on the Saturday prior. That Saturday in recovery my face was bright red, flushed and felt strange. I asked for a mirror and I told the hospital staff something was wrong with my face. There was no outward evidence to them and they dismissed my concern. I was discharged with a clean bill of health on Tuesday. The paralysis did not hit until Wednesday morning. I didn't know it until I took a sip of coffee and could not close my lips. I was wearing my coffee.

      I still get cramps on the side of the face when I smile or laugh. When I am stressed or tired the symptons become worse. It has become unnoticable to me most of the time. Until I see a picture, not all are bad. There are times its painful physically and emotionally.

      My left eye waters when I eat, my children often thought I was crying. That is still embarassing. I initially lost weight because I did not want to eat in front of people. I do smile, a lot. I always have and always will. My eye gets smaller, and my left eye brow is pemanantly raised. My cleft has move under my chin to the left. When I massage my face there is pain still. People still call me smiley.

      On the plus side I don't have the age lines on that side of my face since I had that side frozen at 25. I try my best not to let it bother me, there is a part of me that wants my other face back. I also consciously pose my good side to the camera though I have been less careful lately and I notice it!
      My husband in a backward compliment said he likes that I am not completely perfect (that a joke, of course)...MaryTherese

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  7. I had bells pulsy 18 months ago i still feel my eye getting smaller when i move my lips i waited all these time bcoz i been told it takes up to 18 months to fully recover but it didnt for me its the time to move and start seeing doctors,but dont know where to start my bells pulsy wasnt that bad and i was able to blink and smile after 3 weeks and i felt everything ok a few weeks later i start to feel my eye getting smaller when i eat or yawn or move my lips i ignored it as the doctors said u fine give it 18 months and u will be completey fine any advices thank you.

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    1. Hi Max have you tried electrical stimulation through acupuncture or macro electrical stimulation? That really helped me and I would suggest that to everyone with BP. my recovery didn't even start until 3 months after the onset. I still have some residual but it's not that bad in comparison to what it was. I was able to still get recovery for about 3 3-1/2 years. I have not really had the opportunity to have more acupuncture for a while. The electrical stimulation is the real key but you want someone that has some idea of facial nerves or has treated Bells Palsy before. I hope that helps.

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    2. Yes, my eye got smaller and would close when I would chew, talk or smile. I consciously tried to isolate my muscles in my eye to not close when I would make an O with my mouth. Look in the mirror and try to practice, I know it can still get better, very slowly but it can. It's going on 6 years for me - gosh that is hard to believe-but it does not feel as tight as it did. It helps for us to know that we are not alone.

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  8. Hi Birgit, I'm from Long Beach, CA. I've lived in Denver, CO for eleven years now. I got Bells Palsy Feb. 21st, 2007... one week after having my twins who were born on Valentines Day. I was 38 years old, got Bells, postpartum depression and had to deal with twins right out of the NICU all while my body was trying to recover and dealing with a not so nice husband. I'm glad those days have passed. The twins are finishing up Kindergarten now and my other half has grown up some. My face never fully recovered. My right eye is squinty, mouth crooked, can't whistle or blow up a balloon. I still drool sometimes and I have a pain on the back of my head that doesn't go away...feels like a bad bruise. I have to say though, I never cried about the Bells...we laugh a lot. If you can turn the sadness into humor, it makes for great therapy. I think it actually helped me get through the postpartum depression. I went for acupuncture for 2 years. I'm not sure if it helped, but it felt good. This is the first time I posted anything about my Bells Palsy....it was nice..Thank You for your website ....Leslie

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    1. Hi Leslie thank you for your comment - what a lovely positive attitude you have and I completely agree. Thank you for writing on my blog and like you I still have the residual affects.

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    2. any effective treatment so dat my eye and eye brow be in their normal position... plzzz am waiting for your response

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  9. Hello everyone. What a great thing it is to be in the internet world, where you can type in your problems and you will have hundreds of people sharing the same things!

    I got affected with Bell's palsy in 2007. Not very sure what was the reason, but the doctor said that it was because of the adventure sports that i did in Malaysia (where i was vacationing with my friends). 3 days after i returned from the trip, i woke up in the morning to realize that i couldn't brush my teeth. Somehow, my jaws wouldn't open. I told my mom, i think i am paralyzed!!
    Having never heard such terms in day-to-day life and especially from a young girl (i was in my last year engineering in 2007), my mom thought i was still half asleep. She told me to stop talking non-sense. But then, in a few minutes we all realized something was wrong with my entire face. My left side of the face was affected. Eyes and jaws were drooping down.
    Internet was there even then, and my dad found out in a few minutes that it was Bell's palsy!!
    Went to the doctor, he said there is no cure for it, except to have some B12 vitamin capsules. As suggested by him, i did get cured in a month's time....but i guess just 80% till date.

    My eye is still small today after 6 years. I really had a beautiful smile and I remember one person complimenting me that i had the most refreshing smile..i HAD..:-(
    It's not the same any more. I have to smile consciously, so that my one eye doesnt become smaller. Sometimes during a friends/family get-together, if i laugh loudly (unconsciously of-course..consciously, i try hard not to laugh), one person or the other asks me - is there some problem with your eye?
    I have to tell them, it's probably because i did not get a full night's sleep..
    To be honest, i don't mind telling them that it is cause of this bells palsy thing, but people misunderstand the term paralysis. They dont understand it. It's just cos of lack of Vitamin B12, and nothing else.
    Fortunately, my close ones and my friends never make me feel conscious. But i dont enjoy my face like this. I cant pose for the camera like i used to before. I used to take like a hundred snaps of me wherever i go.. and now, i fake it and say, let me instead take the snaps, i dont want to be in the snap.

    I dont know when my face will be healed completely. If at all there is any chance?

    I read here that exercise and electric simulation does help..i never tried those cos my doctor said that nothing is gonna help. He is like i should be happy in how much ever my face has recovered.

    Though i have everything in life, and i consider myself very lucky, i still feel that if just this thing gets cured..i will be so happy once again..to SMILE..

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    1. Hi and thanks so much for your story. I completely understand. In my profession I have to have lots of photos of myself either with students, teaching or in my dvd's. What I have done is turn the left side of my face slightly and that seems to solve the problem. Most people don't really notice since they have never met me before, but I know. I still feel the my face pulling and have the smaller left eye. My neurologist said I would NEVER recover and if I would have taken her advice I would have never done anything about it to improve. The electrical stimulation did help, people noticed a huge improvement about after a month or two. It's been almost 6 years for me so I doubt if any more therapy could really help, but, never say never. I am still conscious of trying to isolate my facial muscles when I smile but the improvement is HUGE and I am very grateful for what I have. I too felt that I use to have a nice smile and now I feel that my face is a little harder. All I can say is that I have A LOT of character (as if I needed any more) I am not sure if the electrical stimulation would help you or me at this point but it may be still worth a try. Best wishes Birgit

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  10. Dear bell palsy acquaintances,
    I had BP when i was on my 35 weeks of pregnancy in 2012. i still remember 19 February 2012 as the date where my left facial expression stops!! Aside from having to deal with my weak physical trimester condition, I also had to deal with my depressed emotional situation and to be frank it is much more easier to cope with pregnancy rather than BP. I had mixed feeling at that time and felt so embarrassed to go out from the house to meet people. I was being prescribed with Prednisolone & Steroid tablets and informed by the doctor that I can recover with 7 days!! Though I was sad with the inability to smile widely, gargle, move left facial side at but I was kind of happy to know I will recover within 7 days. But as 7 days went by I did not recover and upon re-visit the doctor told me that my nerve damage could be severe that was why I still did not recover and my recovery process could be slow!! At that time I was feeling extremely sad and don’t know how to face “outside” world with my tilted left face! I took another 2 weeks off from work. When I came back to work I received strange looks & questions. Gosh!! I hate those looks. I still remember i cannot scream to release my labor pain just because wasn’t able to open my mouth wide…..it was really not easy to deal with BP 
    But now after 16 months of my BP attack I still did not fully recover. My left eyes a bit smaller, cannot smile widely, tears coming out whenever I chew or focus to something, unable to gargle, slightly crooked nose & mouth, stiff nerve on my left facial side & neck and not to mention unstable emotion. I remember people used to tell how big eyes and nice smile I have but now it’s gone. When people look at my kids they no longer associate their big eyes with me and it does hurt me though I pretend to appear calmly. But as life has to go on…………I know try to accept my current situation aside from crossing my fingers and pray that it will go off in the near time. Though I stop my acupuncture & reduce the electric simulation therapy but I never give up should I hear of any therapy that could help me with the BP. People might not know how we’ve gone through with BP but for those who experience it I would have to say that we are the chosen and strong person as it is not easy to handle BP  Bravos !!

    fiza -msia

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    1. Thank you for your comment, you have expressed the emotions that many of us feel. I have to say I still believe there is hope for you. It has taken a very long time but I still had improvement for up to 4 years - slow but sure. Please don't give up consider isolating the facial muscles in your mind and then with effort try to move them. My recovery didn't happen on its own it was A LOT of work.

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  11. I am glad I found you. Last November 2012 I became seriously sick with shingles, and as a complication I am suffering from Bell's Palsy on my right side. It has been almost 8 months, and I have improved a lot, with therapy, massages, exercises, etc. Nevertheless, this paralysis changed my life completely. I learned to leave everything in God's hands, because I realized that something like BP can be devastating to your self esteem. I have also learned to leave in the present, and to be more humble and less materialistic. For me at first, it was devastating, but now I can say it was a blessing from God. I used to cry when I saw myself in the mirror, now I say a prayer and thanks God for this trial that has made me stronger.

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    1. You are beautiful and thank you for those comments, you will help many other people with your positive attitude.

      I remember when I was first affected, I was a little upset and wished it didn't happen but felt blessed that it wasn't a stroke or something much worse (I had no idea I was really much sicker then I thought). At that time another dear friend of mine was going through life threatening events and I thought I really had nothing to complain about and this was superficial problem and anyone that had a problem looking at me — well that was their problem...I didn't think that I needed MORE character but I guess I did.

      You are absolutely right, it makes you stronger. What I wasn't prepaired for was an event that happened in my workshop where a woman had a stroke, I could see her face drop, just like BP but knew it wasn't BP from her slurred speach and limp arm. I was able to get the medics there and her off to the hospital but what I wasn't prepaierd for was my own PTS. I wanted to run, cry scream and hide all of which was not my normal MO I usally can handle situations and did, only felt the surprising feelings, it brought me back to the moment when my BP happened, which I thought I had resolved. Yes, we are stronger from everything we go through and thank you again for your comment.

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  12. Hi, nice page. It will be 2 years this August 27th.
    I'm really sad to read about ppl who have had palsy for more than 3 years.
    I don't know if I have Bell's palsy or something else. Both sides of my face left me that day.... Followed by days of sickness, sweating in my bed to the point where I had to change sheets often and blinding back pain in my mid to lower back.
    I saw doctor after doctor all who agreed it was Bell's palsy.
    I wasted a year trying conventional shock therapy with a physical therapist.
    I gave up for a few months before staring Accupunture and low pain free shock therapy with the Accupunture-ist.
    She insisted I see a chiropractor.
    My first sessions with both revealed a lot of tension in my neck and back that I never even knew I had.
    I see the Accupunture lady 2x a week and the chiropractor 1x ever two weeks.
    I started treatment with them January 17th 2013.
    So it's been 6months just about.
    The only improvements that are note worthy have happened in that time.
    I can't move my face hardly at all but at least my face and lips don't droop where it is obvious and so I don't have to be embarrassed.
    My wife can tell when I'm trying to smile. I can kiss with some pressure behind my lips.
    Keeping hope alive is hard. Very hard. Somedays I want to give up but I keep going for my wife.
    I hope those of you who read this don't give up. Try what I have.
    Take anti inflammatory pills, Accupunture, see a chiropractor try cold laser therapy. There is a lot I have not tried but I will as time goes on. 3years for significant improvement may be true according to some Hi, nice page. It will be 2 years this August 27th.
    I'm really sad to read about ppl who have had palsy for more than 3 years.
    I don't know if I have Bell's palsy or something else. Both sides of my face left me that day.... Followed by days of sickness, sweating in my bed to the point where I had to change sheets often and blinding back pain in my mid to lower back.
    I saw doctor after doctor all who agreed it was Bell's palsy.
    I wasted a year trying conventional shock therapy with a physical therapist.
    I gave up for a few months before staring Accupunture and low pain free shock therapy with the Accupunture-ist.
    She insisted I see a chiropractor.
    My first sessions with both revealed a lot of tension in my neck and back that I never even knew I had.
    I see the Accupunture lady 2x a week and the chiropractor 1x ever two weeks.
    I started treatment with them January 17th 2013.
    So it's been 6months just about.
    The only improvements that are note worthy have happened in that time.
    I can't move my face hardly at all but at least my face and lips don't droop where it is obvious and so I don't have to be embarrassed.
    My wife can tell when I'm trying to smile. I can kiss with some pressure behind my lips.
    Keeping hope alive is hard. Very hard. Somedays I want to give up but I keep going for my wife.
    I hope those of you who read this don't give up. Try what I have.
    Take anti inflammatory pills, Accupunture, see a chiropractor try cold laser therapy. There is a lot I have not tried but I will as time goes on. 3years for significant improvement may be true according to some severe forms of palsy but there's so much doctors don't know about Bell's palsy it would be silly to just give up. severe forms of palsy but there's so much doctors don't know about Bell's palsy it would be silly to just give up.

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    1. Hi and thank you for your comment.
      I would like to suggest that you see a good Lyme literate doctor and follow up with the possibility of Lyme disease, it's sounds suspicious that you had both sides of your face affected, night sweats, pain in the back & neck. I might be wrong but the fact is that about 60% of BP patients actually do have Lyme and the BP is just a symptom of the infection — or co-infection (other tick born diseases)

      Thank you for your positive note to others on not giving up and your right there is always room for improvement. The nerves grow so slowly and if you have sever cases of BP it simple takes time and not to give up...after all of that time I think it is still important to still to be aware of isolating the muscles (which can be a lot of work) and exercise and stimulate them. It will now be 6 years since I first came down with BP and it's basically livable and doesn't really bother me anymore, it still is a little tight but in the bigger scheme of things it's all good.

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  13. I've got Bell's Palsy in 2008. I had an ear ache and woke up with the right side of my face paralyzed. I was left with synkinesis - my eye and mouth seemed to have suddenly become connected and I was unable to smile, talk, or eat normally . For years I could not close my eye unless I closed the left one. I too avoided having my picture taken but I always believed that someday things would change. Two years ago I found some exercises on the internet and started doing them. Within days I could close my right eye while the left one stayed open!! My eye is still connected to my mouth though but I'm hoping that someone will post a new exercise that will help me with that.

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    1. Thank you for your comment and congratulations on your recovery, do you happen to know the specific link that you used?

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  14. my Bp is 5 years old now.. i am starting to love and accept this. its not very obvious though but how I wish my face will return to its normal shape.. a doctor told me that medicine evolves, i hope one day, i can find procedure and medicine that will treat this completely... I miss my beautiful SMILES..... but I'm lucky my husband told me last night that even if my face will turn upside down, he will still love me...

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    1. Thank you for your comment beautiful. My husband says that he also likes my crooked smile - thank you again

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  15. It is nice to read some positive comments about BP. I have had it now since Sept. 2012, I thought for sure it would be completely gone but it just a slow recovery. I experience the same as everyone else here (squinty eye, tight face, watering eye), later on from blood tests my doc said I had mono and I didn't even know it! People don't notice the issue w my face, my boyfriend still loves me and thinks I am beautiful but I have the worst time when I see old pictures of my wide beautiful smile. I just cannot imagine living life without a big smile, I always hide my laughs, smiles and expressions. What if I ever have kids? I want to laugh and smile with them. It does get better, and I still have hope that I can return to my normal state. Yes, you appear younger on the bright side. At 30 years old I recently got mistaken for a teenager! I haven't had any treatment in the past few months. I tried acupuncture in the beginning, it was so painful and expensive for me. I did a lot of chiropractic work since i did have some neck problems but I stopped that too now. I would love to get some speech therapy or something since I seem to mumble and cannot pronunciate words well. I feel better about the situation when I eat well, sleep, exercise, and surround myself with positive people who do not judge me. That is all you can do right? No use crying over I suppose.

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    1. Beautiful comments - yes having that younger side is one of the benefits :) I considered having botox on the other side so it match - but I wouldn't do that to myself do know what the results would be.
      Maybe the acupuncture needles were too big or didn't know what they were doing for facial stimulation but it shouldn't hurt, only a very slight stimulation I did as much as I could but it did get expense. It sounds like you have a good positive attitude and you will be able to help many others through your experiance. Wishing you all the best Birgit

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  16. I woke up with BP last November 2008, when i was 28. It took 5 months before i started to move my left face, slowly it showed progress. I went to treatment (accupunture) and maybe it helped with the recovery. January 2014, after more than 5 years, i did not have full recovery. My left eye squints when i smile and my eyebrows rises. My eye gets watery when i chew hard. Now i subconciously face to the left when i see a camera; i cant smile as i used to. Good thing i wear eyeglasses so it covers the puffy eye. Maybe it will get back to normal, or not. My wife still massages my face once in a while; i think it helped. Helped me to realized that no matter how different i may think i look like than before, my loved ones still see me as if nothing changed.

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  17. I have found it very comforting to read all of these stories and be reminded that I am not alone. I was diagnosed with BP in March of 2013 and I feel certain that stress played a major role in my case. Within days of getting Bell's I developed a lot of eye complications including corneal ulcers and had to keep my eye patched 24/7 for about 3 months. After a difficult 3 months I finally began to experience some subtle signs of movement and have made a fair amount of progress in the past 6 months. Currently, my main issue involves the severe contractures in my affected eye as well as synkinesis and constant spasms. The spasms seem concentrated over my cheek bone. I am also unable to raise my eyebrow or smile which has really impacted my self esteem. I am trying to stay positive about the future but this has been a difficult experience and much harder than I thought it would be. Anyway, just thought I would share my experience. Thanks for taking the time to make this blog!

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  18. I've had bells palsy on my left side of my face and everyone keeps asking why am I so mad or sad and whenever I say its just the way my face is, they think I'm just being mean when I'm not.

    I got it when I was just 8 years old and now I'm 18. I still have it. My parents can't afford for surgery or therapy and people make fun of me. Its only gotten worse now.

    I feel good about myself at most of the time but there is times where I do wanna look normal like everyone else. :( I'm still trying to accept myself as I am now..

    ReplyDelete
    Replies
    1. Thank you for your post, you are very strong and courageous. Many of us with residual BP know exactly how you feel. Even if the majority of the time we don’t think about it, we know that it is still there, either with pain or the tight pull feeling. What we have gone through with this experience does make us stronger and most often more compassionate to others with afflictions.

      I have found that my unaffected side try’s to compensate for the weak muscles in my left side, which then looks more exaggerated. Like you, I feel the same way wondering if people think that I am mad, mean or sad, but that is not my problem nor can I do anything about it, it is a reflection of their reality and when just being me, who I am they don’t seem to notice, besides they didn’t know what I looked like before.

      Delete
  19. I've had b.p twice. Both times were during pregnancies. The first time it lasted a total of 8 months and I recovered completely. This time however its been three years and is about 60 percent. In the past few day my ear has been killing me my face hurts and feels huge I feel tightening all over on the side effected and also where I could see 4 teeth now I can only see two.... I've been searching for answers of what's happening and what I can do to help... I've found nothing.. can someone please help?

    ReplyDelete
    Replies
    1. HI, I know that BP can happen during pregnancies, but with it happening twice I would take a really good look into the Lyme possibility.

      In many cases BP is an indicator or Lyme. I know that doctors may prescribe steroids for the pain but unfortunately that creates a flourishing environment for Lyme. It might be a good idea to go and see an integrative medicine doctor that understands about Lyme and co-infections. Mainstream infectious disease doctors have a different approach and may not be looking at the more subtle details. BP and the pain can be masking a deeper problem, or at least rule it out. Wishing you all the best.

      Delete
  20. HI, i have BP for 30 yrs. And i am 80percnt recovery. I dont mind it anymore and enjoying life to the fullest. As what my neurologist say, maybe BP brings luck to me and I always believing in it!

    ReplyDelete
  21. I was diagnosed with BP in July 2012. I am a 34 year old female. My face is still a little "crooked" - has anyone experienced headaches that are on the BP affected side?? The crookedness doesn't bother me as much as it used to, but the headaches are awful! I have tried advil, Tylenol, Excedrin with little to no relief.

    ReplyDelete
    Replies
    1. Hi for myself, I had quite a few headaches especially in the beginning and had quite a bit of pulling and aching on my left side but I found that the continual headaches were actually from the Lyme disease. Once I treated the Lyme and co-infection my headaches greatly deminished.

      Delete
    2. If you haven't already been tested you have to know that the tests are not very good at finding Lyme. There is a better chance of finding it if is active but the bacteria has a tendency to hide out and protect itself in a cyst form (which will give you a negative result) until its host has the right environment again. I had lots of headaches with the Lyme.

      Delete
    3. Basically 60% of BP patients have Lyme so this must be fully investigated.

      Delete
    4. Thank you for the info. No, I have not been tested for Lyme disease but I will talk to my doctor about it. Thank you!

      Delete
    5. Just one thing about talking to your doctor, most doctors are not really educated about Lyme disease or co-infections, starting with your doctor is fine but don't think thats it if he says not to worry about it. It was quite a battle for me to get the answers and the right diagnoses - talking to a Lyme literate doctor is best, ask your doctor if he knows about co-infections and if he does know about Lyme disease how does he feel about long term antibiotics. That will say a lot right there -
      http://bellspalsylymesdisease.blogspot.com/2012/04/bells-palsy-and-seven-negative-lymes.html

      Delete
    6. No ticks in alaska.......wonder how I got BP?

      Delete
    7. Ticks in Alaska view this link http://www.adfg.alaska.gov/index.cfm?adfg=wildlifenews.view_article&articles_id=557

      Delete
  22. Ticks in Alaska
    http://forums.outdoorsdirectory.com/showthread.php/99873-Ticks-in-Alaska-no-longer-a-mystery

    Bulletin http://www.epi.alaska.gov/bulletins/docs/b1991_25.htm
    there are more links you can look at but maybe your BP is not from Lyme it is only something not to be discounted.

    ReplyDelete
  23. I was diagnosed with BP in February I was 39 it affected the left side of my face as well..I also get severe headaches and nothing seems to help..my smile is back but my left eye feels different..maybe weak still, almost like its partially closed , just scares me because every time I get a headache I'm scared it will come back

    ReplyDelete
    Replies
    1. Dear Anonymous, please follow up on Lyme Disease - I understand about the pain

      Delete
  24. In 2007 I got Bells Palsy, my diagnosis, I would never recover.
    Most people recover within 2-4 weeks, at three weeks I was just starting to get a tiny hit of movement in my lip. When I would see people and children looked at my face with shock and I would always explain what happened. Men that had known me cried, and I couldn't understand why (not much for self-esteem) I thought I "MUST" look like a monster. But now, I think more then that, they cried because they were afraid it would affect my personality, I am always so upbeat, happy, smiling and now one side of my face was frozen with my left eye wide open.

    I always knew I had character but ...really...did I need more?

    From 2007 - 2010, I went through periods of acupuncture, physical therapy, macro electrical stimulation and
    things greatly improved, but it was an extremely slow, slow process, I would say that I about 80 - 85% recovery.

    Due to the expense of the Lyme treatment and my concern that the over stimulation sometimes caused spasms, such as a "jokers smile", (which horrified me) I would take breaks from the electrical stimulating of the muscles and nerves and knowing that the nerves grew so slow I decided that I needed to give up treatment on my face and focus on the treatment of the Lyme disease.

    Now 7 years later, I feel that I have given my nerves time to grow and am now starting acupuncture again to see what happens.

    ReplyDelete
  25. Hello im sam from jordan 32
    I had BP in 2007 after i had wisdom tooth extraction in the upper left side
    One week after the extraction i had BP
    I had recovered 90% in 3 months and since then im still the same
    I donno if doctors here r not that good as they didn't care about the cause
    My left eye still slightly close when i eat or laugh or even smile
    I had the best smile ever i had this comment from one of the pax as im a flight attendant
    Now i feel really down about it
    Can anybody help
    Sometimes i feel my eye cramp alittle
    And i feel like the nerve is improving but no good results still
    Plz help

    ReplyDelete
    Replies

    1. Hi Jordan, I don't know how much things can get better but I am one that always keeps keeps a positive attitude and keeps trying. I know that there is only so much we can do, but my thought is since it is now 7 years later I would try acupuncture with electrical stimulation again. The difference this time is that it is a little painful when I get the needles, due to many of my nerves have finally come back to life (which is good) but the muscles on the left side of my face have atrophied a bit, with the electrical stimulation we are trying to exercise the muscles.

      This time I have a different doctor, Dr. Wang and he is using pretty big needles (not baby needles as he calls it), baby needles won't do anything. I have had positive response from people that have seen me, which does surprise me that they can even notice, it is so subtle.

      I still feel pulling but it also helps me to be aware when I try to isolate muscles. I try to smile or pucker and relax my eye instead of everything pulling, a lot of work but why not give it a try.

      Delete
  26. Thx for reply
    Im afraid the nerves are grown again in a wrong way as my left side of the lips are going down when i close my lips so it won't go back
    This is what my doctor told me
    I wish u all the best and full recovery

    ReplyDelete
    Replies
    1. I understand, that is what I was thinking too, but I have heard lots of things from doctors and most often it didn't go the way they said it would. I was told, I would never be able to blink my eye and they wanted to put a gold weight in it. I said no and can now blink, they said I would never have any recovery in my face since I did not have any function after three months, it took a very long time but I never gave up and have almost full mobliity..so basically what I am trying to say is not to give up unless you want to. I figured yes it's been 7 years but that also means since the nerves rejuninate so so slowly that perhaps it's time to try to wake them up again, wishing you all the best too

      Delete
  27. Today, I had a pity party. I was sitting in the passenger side seat of my son’s car, and as the sun came through the front window I could feel the right side of my mouth tightly pulling upwards due to the sun light bothering my right eye. Looking in the side mirror of the car I saw this nasty sneering face looking back at me. I was immediately hit with full blown agitation at the realization, again, that I could not control what my face was doing. It has been almost 3 years now since I was hit with BP. I look pretty natural now, as long as I don’t laugh, smile or look at the sun, lol. I came home and pulled out my laptop to find a way to fix this tiring aftermath of BP, and found this blog full of people just like me. Thank you for sharing and thank you Birgit for this blog. It’s nice to hear from others who are going through the same thing, as the doctors out there either do not know or as I think, just don’t care. I find that if I have a day where I talk a lot or laugh real hard or like today’s car ride, my eye, cheekbone and the side of my mouth aches. Will it always do that? Does anyone find that their affected eye is now somewhat light sensitive? I have done acupuncture and found it to help, maybe it’s time for another round.

    ReplyDelete
    Replies
    1. Hi, even if the doctors tell you there is nothing else you can do and there is no more possible recovery, I'm here to tell you their wrong. I was still improving at 3-5 years. But it did take acupuncture with electrical stimulation. The doctors I saw at that time used small needles or Macro stimulation, I did whatever I could comfortably afford. Much of the time I didn't really notice the difference it was actually the people around me that mentioned it to me. Now 7 years later I'm doing acupuncture again, but bigger needles more stimulation and yes it is painful this time. But that also means the nerves are connecting now, I learn not to stimulate where I already had a Hemifacial spasm it only got irritated. But in general it is much better.

      Delete
  28. I had Bells Palsy a little over 5 years ago and I've noticed in the past year or so that my right eye (affected side) won't open as much, and has a thick fold in the eyelid, that I can physically hold up, but looks droopy when I don't. Also, I've noticed a couple of sties on that eyelid, or something like that. Possibly caused by the palsy, or just the aging process?

    ReplyDelete
    Replies
    1. Hi Sherri, it could be a little of both but as I mention in one of my other posts, I am now doing more accuputure with electrical stimulation, it's a bit painful but what it is doing is working out those atrophied muscles and might help you too. With the BP and years of nothing the muscle needs to remember to lift. Hope that helps

      Delete
    2. I have Bell's Palsy for almost three months. Do you feel anything on your face when is healing?

      Delete
    3. I didn't feel anything for a very long time and ONLY a little after acupuncture with electrical stimulation. After three months I had minimal movement around my mouth and felt nerve stimulation much later and most often after acupuncture and occasionally now and then. 7 years later I do get occasional tingles but that seems to be after I try to stimulate them again with acupuncture. My thoughts are that the nerves regenerate so slowly and the muscles have atrophied that the occasional stimulation might help.

      Delete
  29. Hello im truly inspired by your story my name is Crystal Williams im 29 I was diagnosed with bellspalsy 2yrs ago, I haven't got any treat after the first treat of steroids, my mouth still drops when smiling, still pain sometimes, fold by my nose, all from sykenisis. Im soo down and out right now I wish I someone personally to relate too, Im ashamed to be around a crowd of people. Im going to get some insurance soon so I can find out whats the underlying cause. But im truly inspired and thankful for your encouraging words :)

    ReplyDelete
  30. Also I have a cyst on the right side of my lower head, right on the corner, do you think this could be playing a role in my BP. Its about the size of a quarter.

    ReplyDelete
    Replies
    1. Hi I had a cyst at the base of my head on my neck. It finally went away when my Lyme was in remission. You might want to really investigate the possibility of Lyme. It's not so easy to find and many doctors may not take you seriously but I would look I to it. Even men I mentioned the cyst to my Lyme doctor he really didn't think it was related but funny I had it when I was really sick and it's gone now.

      Delete
  31. Great news I think I do have lyme disease all of the side effects from the disease ive had or still experience. My dad is retired military so we stayed in ftknox Kentucky close to many deers. Also chronic arthritis which started at 16 for me also.meningitis of the brain which I had at age 21, now bellspalsy wow! Everything makes since now..thanks soo much!

    ReplyDelete
    Replies
    1. I was thinking that you might have had Lyme for awhile I'm glad that you came to that conclusion on your own, the next step is finding a doctor that you can work with, this is not always easy and you will need to be your own advocate.

      Delete
  32. Hi Birgit, I was wondering what your opinion is of facial toners, the ones you purchase for home use, that provides micro currents to stimulate the muscles. It's been just over 3 years since my Bell's Palsy and I find that during the winter months my cheek aches. I have seen the facial toners advertised for toning the facial muscles and was wondering if it would help with the residual effect of bells.

    ReplyDelete
    Replies
    1. I haven't tried the over the counter electrical stimulation machines but would like to investigate it a little more, sounds really interesting.
      If it's really color outside I try to protect my face, I don't really have much pain in my everyday life but if I touch certain facial muscles inside my cheek I do.

      Delete
  33. Great post......Bell's palsy is a form of facial paralysis resulting from a dysfunction of the cranial nerve VII (the facial nerve) causing an inability to control facial muscles on the affected side.
    acupuncture nj

    ReplyDelete
  34. When I got bells palsy I was 14 years old. Not only was I a teen who just wanted to be accepted but I felt ashamed and depressed when people would stare at me. This in some sort of way was a blessing in disguise. I wanted to fit in and be like everyone else but slowly my thoughts about life in general started to change. Two years later my face hasn't returned back to normal but it's okay. I am a different person than I used to be. I love myself and am thankful for the experience I went through.

    ReplyDelete
    Replies
    1. Thank you for your beautiful comments and positive attitude and I agree.

      Delete
    2. If you haven't had a chance a little acupuncture electrical stimulation may still help, you will here doctors say no it won't but I had very slow progress for up to 5 years. At least I got more sensation back, hope that helps.

      With your experiences you are helping others thank you for sharing.

      Delete
  35. Hi Birgit. I have only just discovered your blog. I am 18 months in and my face is FAR from normal. My neurologist says this is as good as it is going to get for me but your post has given me some hope that there may be some more improvement for me after all. How are you doing now? Have you had any more improvement since this last post? I really hope so. I actually have Ramsey-Hunt syndrome and BP is just a symptom of it (along with other nasty symptoms). I had 100% palsy. Please let me know how you are doing now

    ReplyDelete
    Replies
    1. Hi, I had recovery for about 5 years and when I have a sec I'll post a new photo. I constantly am aware or the tight pulling in my face - I use to have more of it in my neck too. One thing that happens with the lethargy of the affected side the good side overcompensates and gets stronger which unfortunately really shows off my other side.

      If I'm tired the affected side has weaker muscles and droops and if someone wants to be mean say's something about it.
      Wishing you all the best

      I don't spend a lot of time looking at myself in the mirror but when I could I would look at myself and tried to identify the muscle movement felt it, identified it in my mind then looked away so my brain would separate the muscle movement. The nerves take a very long time to grow and hopefully in the direction we want them to.

      Electrical therapy helped wake up some of the nerves

      Delete
  36. 3.5 years BP
    I need help
    6th round of taking meds
    Nothing works
    I'm tired

    ReplyDelete
    Replies
    1. Hi - I am so sorry ... just to make sure they are giving you meds for Lyme not for BP right?
      There is no medication they can give for BP

      If you had BP for 3.5 years and are just starting the meds for Lyme that means you have had Lyme for quite a while and the treatment will take a while too.

      6 rounds - are they pulsing your medication (meaning time on time off)
      Some doctors do others don't you never know what will work best, seems like a good idea but you never know when the Lyme will cycle.

      Another thought is continuing to change medications since Lyme seems to morph. Lyme can cyst up in your body until the hosts environment is suitable for it to hatch and that is when you want to hit it that would also be the though for pulsing the medication.

      There is also something called the Herx reaction which might be something that you are experiencing that is when the Lyme bacteria dies and your body is trying to eliminate it, this can feel overwhelming and actually worse then when you first started the medication and at that time many people stop when they should be continuing.
      Looks at these links

      What is a Herx reaction
      https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=161
      http://www.silver-colloids.com/Pubs/herxheimer.html
      http://en.wikipedia.org/wiki/Jarisch-Herxheimer_reaction
      http://www.tiredoflyme.com/the-herxheimer-reaction.html#.VSKPolqEkdg
      http://doccarnahan.blogspot.com/2012/11/tips-for-dealing-with-herxheimer-or-die.html

      (I'm no doctor) but from my experience it sounds like a couple of things might be happening.

      1. You might have had Lyme longer then you thought (seems like the longer you have it the longer the treatment)

      2. The meds might not be right or the Dr's are continuing to give you the same ones, they started me with Doxi then Azithromax, then Ceftin and they may have others they prefer now too.

      3. Perhaps you also have a co-infection - which is very common, you usually don't seem to get one without the other. If they are only treating you for Lyme and not co-infections that could be a problem.
      (some believe that you treat the confection first before treating Lyme - others believe treat both at the same time)

      Another thought of mine is that if the doctors put you on a pic line or started you out on high doses of antibiotics it might be just too high for you at that moment.

      I was on oral antibiotics for 1 year before they gave me a pic line, at that time I would have thought a lot of the Lyme was gone but after the pic line the Herx reaction just wiped me out and I was glad that they first started me out on the oral otherwise I don't know how I would have handled it.

      Delete
  37. Hi. I have had bells palsy for 8 years now. I share a lot of the same symptoms as those posted including squinty eye and am wondering if you believe that a brow lift is a good permanent solution?

    Also, my biggest issue is that whenever I show any emotion my whole affected side of my face experiences a warm tingling numbing feeling. Now in your opinion, do you feel accupuncture and electrical stimulation therapy are lasting treatment options or does that require continual treatment?

    Thank you and I look forward to your feedback.

    ReplyDelete
  38. Hi I don't know about a permanent eye lift, thought about it though, but I was afraid I would have another surprise. I did speak to a doctor about it and he thought if I could live with what I had I would be better off. I would suggest that you see a doctor for a consultation and see what they suggest.

    I don't get that tingling feeling like you but I do feel a pulling, I would think that tingling is your nerves and (might) be a good thing (maybe) ?

    About acupuncture with electrical stim, in general I think it is extremely extremely helpful but I think there comes a point that it can still help but I have a feeling if it is not kept up it may relax a bit again. I was looking at my face the other day thought the same thing

    ReplyDelete
  39. I too have had BP for some time now....2 yrs 3 mo. I had a strange feeling on the tip of my tongue the day before I woke up with BP. Mine came on slowly that morning and after being sent from my local ER to a larger hospital an hour away bcs the docs thought I may have been having a stroke ( which, I knew i was not), it was a total of 14 hrs before they decided BP and gave me anything. I went 4 solid weeks with noooo movement and deep depression. I did acupuncture, cold laser therapy treatment, chiropractor treatment and physical/ electro stimulation. I have what I call a Pop-eye smile, bcs my mouth only goes up on my left side. My eye gets squinty, and I went from loving to have my picture taken to tolerating it, bcs even a soft smile looks like a smirk. I have words that seem to come out of the side of my mouth and I have a lisp now. I still have pain in my jaw line, forehead, and behind my ear. I wish docs knew more about BP and wouldn't lead you to believe in a couple months you will be fine, bcs there is that percentage of people who do not fully recover. I am most sad on happy occasions with my children that I can't smile really big for pictures. Always afraid it will happen all over again.....headaches and twitches make me nervous. I also had a humming noise in my head/ ear prior to my BP. While I had no movement, I had no noise. Once the BP got better, the noise came back. Now, it's a comfort to hear it, as annoying as it is. I feel like if i don't hear it, the BP will be back. Good luck to anyone dealing with this unexplained disease. Don't give up and don't take no for an answer.

    ReplyDelete
    Replies
    1. helo... plzzz tell me how you got recovery from BP? i have it for 9 years now i am 23 i cant even smile in front of my friends.. plzz gv response soon

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    2. helo... plzzz tell me how you got recovery from BP? i have it for 9 years now i am 23 i cant even smile in front of my friends.. plzz gv response soon

      Delete
  40. hello everyone... i have BP for 9 years.. i have similar problems like squint eye eyebrow in upper position and mouth a bit towards left while smiling.. i am of 23 i am really depressed about it i cannot explain it in words.. in earlier time of BP i did some treatment but i dnt remember it because i was quite younger at dat time... even i take some physiotherapy... please guide me what i should do how i can be recoverd from BP. is there any effective drug or any sort of treatment? some one have mentioned the name prednisone does it work?? plzzz gv response soon Birgit

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    Replies
    1. HI Saba Most often prednisone is given in the beginning to help eliminate pain and to reduce the swelling. I don't know how prednisone at this point would be helpful, (but again always check with a doctor) as far as electrical stim, I tried different doctors & acupuncturists each person was a little different in their approach. Some are more aggressive and others passive. Which I believe would stimulate different parts of my face?

      My last series was about 6 months ago I believed helped some but the the person that did it was extremely aggressive and it was pretty painful, so I stopped for a while.

      Also look in the mirror touch a spot on your face, try to isolate those muscles with your mind and then try to move them, any improvement will take time and go very slowly.

      Delete
    2. Hello to everyone here :)

      I am 35 and i got BP on my right side a week after giving birth. They gave me steroids but unfortunately a very low dose at first so i believe the inflammation spread and did more damage than if i was given a higher dose from the beginning.
      I had my first slight movement 3 months after the onset. In that first trimester i did about 10 sessions of electrical stimulation. I did that because the doctors said i might never come back, plus they were really worried that i didn't have any movement after the 1st month.....Of course from what i have learned now, if you have axontomesis (when some of the nerves are cut and not just immobilized by the inflammation) then it's normal not to see ANY movement for the first 3 months!
      Anyway..i now smile just a bit. But i have sunkinesis too. For example when i try to raise my eyebrow i smile instead. When i eat my nose sometimes becomes a bit runny and/or my i eye waters. When i speak or smile my lower eyelid trembles a bit. And sometimes my upper eyelid...
      But i don't mind these synkinesis much. What bothers me is that i can't raise the corner of my mouth when i smile and i also have a chin dimple like an old man!
      Birgit, did you experience this (the not raising the corner of your mouth) in the beginning of your recovery? (I must note that i am now 9 months after the onset) And if yes, how did you rectified it?
      Has anyone rectified this side effect in any way........?

      I must also say here that my heart goes to anyone who have more severe case of BP. I wish them strenght and happiness. And a note to the young sufferers here....Oftenly i think of what would i do if i got this before i got married. Well, i very stubbornly say to myself that i would move mountains until i found someone who accepted me for me. And if that meant having to seek someone with another shortcoming-even with BP then i would do so. I would become very stubborn. I must become stubborn even now, to find my happiness again even in this new dark half expressive world. Until it lights up again..

      Well, maybe i don't know what i am talking about..I just thought i might help someone.
      Birgit i am sorry to have taken up so much space! I hope you answer soon...

      Sending strength to all.

      Delete
    3. Thank you for your comment, so well said.

      Delete
    4. Ditto.....I still have the dimple, in my chin, my throat sags a little on the affected side, when I raise my eyebrows I can feel the smile muscles pull. I can see muscles pull in my neck but I can smile now, not perfect but and sometimes it bothers when having pictures. I try to turn the good side of my face to the camera when having pics to hide the squint or wear sunglasses. In general it's really not so bad and most wouldn't even know. I have worked hard to try to isolate my muscles so they don't automatically pull which they still do but not as bad.

      Delete
  41. I've had bells for over a year now. I was fortunate in that I could close the eye lid on the affected side but overall I have had a pretty severe case with little recovery.

    Prior to the attack, my dog died, my daughter in law died and my wife of over three decades told me I would die alone and ran off. I lost my house and my car and ended up in a terrible apartment. The only work I could find was a low wage job. I felt like giving up.

    I feel the stress caused the attack. I kept trying my best to overcome all this but nothing seemed to work. I couldn't keep the apartment my and spent the last two months there with no electricity or heat.

    I ended up without a home. Just me, my dog and half a smile.

    I've managed to find decent work now, last week a co worker publicly mocked the way my face looks. Prior to losing the apartment I dated for almost a year, never got a second date. The bells is always there making my life worse.

    I am living in a garage now and i am dreading the coming winter months. I'm three weeks away from having all my bills caught up and have only six weeks to go before I'll be finished with computer coding and be looking for a better job.

    I'll be back on my feet again soon despite everything. I will have a home again. I'd trade all that for the other half of my smile and someone that can see past the disfigurement dro I don't die alone.

    ReplyDelete
    Replies
    1. Thank you for your comment, how difficult for you, yes stress wears us down and makes us extremely vulnerable I certainly had my share before my BP, I try to remind myself that I am learning lessons even if I am not aware of them at the time. When someone wants to hurt me they remind me of my face - oh you must be tired, your face is drooping, or what's wrong with your face, did you get stung by a bee? why is that eye bigger then the other. What can I say..I of coarse say it's BP which was a symptom of the Lyme disease and most times they feel (stupid -which is ok with me, their lesson) most times I really don't like pictures of myself unless I am wearing sunglasses. So basically I am trying to say - I can relate.
      You have had some really hard times and that would beat anyone down, it does sound like things are start to turn around for you and those people that can only relate to a perfect smile don't really have much character character and are more then likely not worth knowing anyway. Wishing you all the best B

      Delete
    2. I've had it for 30 years life sucks people r not funny

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  42. Was diagnosed with BP almost 4 years ago. My face, left eye, and mouth are very affected. Sometimes left side of my nose is numb. Sometimes have bad days where everything is worse. Sometimes my left ear begins itching-too deep to relieve, and then I usually get an earache. Sometimes my left jaw has unbearable pain for just a few seconds. My daughter said that sounds like TMJ - but if so, it must have been caused by the BP. Been to many doctors, who have not been able to help. I wear sunglasses most of the time because my eye is uncomfortable, but sometimes I just have to put a patch over the eye for relief. My primary care doc says he thinks the right side of my face is now trying to overcompensate for the left side-which makes things worse. Other than that, I think he just does not want to discuss any further. Is acupuncture electrical stimulation quite expensive? I live in a small, rural town and would not even know how to begin looking for an acupuncturist of this nature. Do you have any suggestions? Thank you for all the info you have provided.

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    1. HI Thank you for your comments. We can all relate, I think my right eye over compensates for my left too, all of which I don't enjoy. What I did was try anything that would wake up the nerves a back massager, anything that had a slight vibration, then I went to acupuncture and electrical stim when I could function a little better. I don't want to endorse any product or person but I did just look on like to get an idea of what else is out there. I found http://www.7ewellness.com/products/myolift here are some other things to look at https://www.google.com/search?q= facial +stimulation+at+home&oq= facial +stimulation+at+home&aqs=chrome..69i57.7854j0j7&sourceid=chrome&es_sm=119&ie=UTF-8#q=facial+stimulation+at+home&tbm=shop if you try anything work within your price range and don't over do it or get too uncomfortable. If the link doesn't work look at facial electrical stimulation It won't be a quick fix but we know doing nothing doesn't change anything.

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  43. Hi,
    I am efected from bels palsy from back 2 years,50% recoverd,please help me.

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    1. Hi - I wish I could say there was one thing would fix it but we are all so different, please read a few of the posts and perhaps give some things a try.
      Best Birgit

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  44. Hello everyone, it is so refreshing to luck up and find this page (not sure how I missed it) I've had BP for 6 years after going through a tough labor with my baby girl. It has certainly put a damper on my life I'm so self conscious I used to be so out going. I really do try not to let it get me down I have recovered about 75%. Just recently I have been contemplating facial Reanimation surgery. Has anyone heard of it? I am scheduling a consultation with a doctor that specializes in the procedure I pray he can help me. I am getting married and would love to enjoy my wedding and not worry about the camera and photos!

    Best of luck to you all ��

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  45. Hi Sandy, I have heard a little about it but was afraid to have some new sort of surprise sounds interesting please keep us posted :)

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  46. Hi There!!! Thanks for this blog...I am going on 5 years BP. I don't have lymes they could never figure out my dx. My face is at 90%. I did do acupuncture, pt and electrical stimulation. I did notice where I had the electrical stimulation that part of my face is still pulling! The acupuncture is what helped me the most not only did it move my face but it kept me relaxed and not so much focus on my crooked face! The wind and the sun bother me occasionally but no pain just pulling. I just wanted to share my experience! You are awesome Birgit for starting this blog!!! Big thank-you!!!

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  47. Hi. I was diagnosed with bell's palsy over 10 years ago. I must point out that I have been extremely shy all my life however bell's palsy has made my shyness even worse. I don't feel any physical pain as a result of this disease but I feel so much emotional pain...One of the things that I dislike the most is not having the ability to have a "normal" laugh. Also you always hear how women want a guy with a great smile and that makes me sad. What can I do after 10 years of being diagnosed with bell's palsy? About a year ago I tried acupuncture along with Chinese medicine but I didn't see any results. Thank you

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    1. Hi Anny, we all can identify, we try to move on and get past it but it's always there. The acupuncture only worked when I had the electrical stimulation along with it. It has helped but I am wondering if it does regress if it is not kept up due to the muscles being so weak. I no longer do acupuncture regularly. I'm tried of having needles in my face every week.

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  48. Hi, I have had BP for over 20 years. Got it when I was pregnant with my twins. Woke up one morning and it looked like I had a stroke. Pain was very intense. Since I was pregnant, steroids would not be prescribed. My left eye still tears and gets dry and left side of my face still looks and feels very different than the right. I do not ever want my picture taken as I am very self conscious, which makes it difficult for family gatherings, online dating, linked in profile FB picture, or anything else. Thought about Botox or eyebrow lift consult, but concerned could just make it worse. Does anybody know/have information for BP Resididual effects all these years later? Having my twins was the best thing that ever happened to me, but BP definitely changed the way I see myself.

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    1. Hi Sorry for the delay on your post, I think many feel the same way about the botox or lift, I thought of having botox in the good side of my face and maybe it would make it even, I thought about speaking to a Plastic Surgeon, but then thought, I know who I am now and really don't want another surprise if I can help it, love myself and my family, thank you for your post

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  49. This blog is really wonderful. I enjoy hearing everyone's journeys. I have had Bell's palsy for half my life, I got it when I was 14 years old, the summer before high school. It was very difficult for me, but you get through. I always try to put my left side to the camera and smile. My face is mostly recovered but my nose has taken an odd shape, my eye is very squinty and my smile is pretty small. Of course it's not ideal, but my face has character and I feel I am a better person because having gone through such an uncomfortable and scary ailment at such a young age. I went to physical therapy for 6 months where they massaged my face and did electric shock therapy, it wasn't until 4 months later I was prescribed a steroid. The doctors were struggling to fine a reason for my BP and were scared to start me on anything until they had answers. I appreciate all the comments and I think I will try accupuncture before my wedding next year. To everyone who is scared to take pictures, don't let this control your life. You are all amazing, this is hard, this sucks but you deserve nothing but happiness, so do your best to find it. Sending you all positive vibes.

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    1. Thank you for your post - LOVE your wonderful positive attitude, and Congratulations !!

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    2. Thank you! If I decide to try acupuncture I will certainly follow up. Since it has been so long I wonder if it will actually affect it? Has anyone else done no treatment for about 10 years and tried this?! Thank you so much.

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    3. Your made me cry! My son has bells palsy almost certainly caused by Lyme but by God at this point who knows. He is 13 years old, and we have been struggling with the the right side dropping since August of last year. I was afraid that this would be permanent, reading your post it sounds like it is. I'm sorry this happened to you like my son ,at such a young age, when everything already so awkward and everything about your body is already changing. My heart aches for my boy. I wish there was an instant cure.

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  50. I've had BP for 30 years!!! I got it twice in my late teens and I would say I have about a 70% recovery. As I age, I'm noticing small changes and it freaks me out to think what I will look like at 70. Every couple of years I check the web to see if anything new has come up in the treatment of BP. It's sad that in all these years really no new advancements have been made. I don't know why I've never seen this site before, but it is sure nice knowing "I'm not alone" and that there are others who are unfortunately, going through the same.

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  51. Bec....i got bp in my 3rd trimester of pregnancy with my latest son...as if being pregnant wasnt enough...lol i woke up 1 morning to my lip not feeling right...my otherhalf said to me what are u doing why are u doing that with ur lip? I said what do u mean im not doing anything but it does feel strange...i went and looked in the mirror and realised it was a little odd...i got on with the day untill my whole left side of my face was tingling and i couldnt blink...it was a scary feeling...i had constant headaches and the pain behind my ear and down my neck was unbearable...i couldnt have treatment at the time as i was pregnant..it was i major thing to go through at that point of time in my life as i have other children i still had to do daily things like school and shopping...i hated going to the shops to b served at the service delli and check out as i am such a social person... :-( i didnt wanna even move my face so i didnt look at anyone...my son has just turned 3...so ive had it for over 3 yrs...i wish nothing more that it fully recovered not just for looks i know there are people worse off but for the uncomfortable tighness and feeling i still have everyday...as most people saying 90% just have that eye smaller and hate photos as soon as someone has taken 1 i have to ask to see cause if they snap me at the wrong time it certainly doesnt do me any justice...feel for everyone of u going through bells palsy...wish u a world of happiness... i get by reminding myself that when i was a baby i 1 a baby competition for beautiful big eyes...i wish i could go back to that day ��

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  52. Bec....i got bp in my 3rd trimester of pregnancy with my latest son...as if being pregnant wasnt enough...lol i woke up 1 morning to my lip not feeling right...my otherhalf said to me what are u doing why are u doing that with ur lip? I said what do u mean im not doing anything but it does feel strange...i went and looked in the mirror and realised it was a little odd...i got on with the day untill my whole left side of my face was tingling and i couldnt blink...it was a scary feeling...i had constant headaches and the pain behind my ear and down my neck was unbearable...i couldnt have treatment at the time as i was pregnant..it was i major thing to go through at that point of time in my life as i have other children i still had to do daily things like school and shopping...i hated going to the shops to b served at the service delli and check out as i am such a social person... :-( i didnt wanna even move my face so i didnt look at anyone...my son has just turned 3...so ive had it for over 3 yrs...i wish nothing more that it fully recovered not just for looks i know there are people worse off but for the uncomfortable tighness and feeling i still have everyday...as most people saying 90% just have that eye smaller and hate photos as soon as someone has taken 1 i have to ask to see cause if they snap me at the wrong time it certainly doesnt do me any justice...feel for everyone of u going through bells palsy...wish u a world of happiness... i get by reminding myself that when i was a baby i 1 a baby competition for beautiful big eyes...i wish i could go back to that day ��

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  53. I am now on my 15th week. I still can't even come close to closing my left eye. My smile is a little better but that may be wishful thinking. Everyone at work says I look better and I try to dwell on that. I'm a 43 year old male and I definitely think stress was involved. I've taken the medication, acupuncture, facial massage, and anything else I can think of. So far I see very little improvement. I don't really care about my smile as much as I really want to be able to close my eye. I have a co-worker who is older than me come down with BP and was totally over it in about 3 weeks. The doctor told me the same thing when I first went in. Said it would be over it in 4 to 6 weeks. I'm on week 15 now and I"m not sure what to do.

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    1. I'm so sorry, we can all relate, I'm sure your taping your eye shut at night. One doctor told me that I was going to have to consider a gold weight in my eye lid, which I didn't. It took about 5 months, before I had the slightest movement in my lid, and for that it took A LOT of concentration on my part. I would manually close my eye with my finger and try to identify the muscles in the touch. It wasn't easy and I would have to manually close it for a few months, then over time, it would start to blink on it's own very slowly and out of sync with the other lid. It took a very very long time years...and is now much better and you would not know, the only problem when I smile.

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    2. If you had a bout with sever exhaustion,or one medical problem after another I would get myself checked for Lyme disease, 60% of BP have tested positive for Lyme. Don't give up and be gentle with yourself, stress is huge too.

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  54. Is it too late for my boy??? 12 year s old, his face started dropping last summer in August. We tested for Lyme, he showed positive, bit we don't know from when. He did the steroids, then the doxycycline for 30. He's seen a Lyme specialist, and a physical therapist. His neurologist is not concerned at all and keeps telling us after a year that this will either go away...or it won't. I see no improvement. He's just a kid!!! Please...send us help. Being a teenager is hard enough!

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    1. Hi, your a great mom, from my own experience the PT should be doing electrical stimulation in addition to whatever they are already doing, otherwise it seems pointless, when having electrical stimulation you have to be a little careful not to over stimulate otherwise it can start going in the opposite direction - (now again this is only from my own experience) the nerves and muscles need to be stimulated to a point then a break and then again, otherwise the face just stays in a relaxed state. I would do about 4-6 weeks at a time, then take a break for a few months, it was difficult to afford both Lyme treatment and acupuncture, if you have insurance the PT should be covered but they need to add the stimulation.
      Many acupuncturists, doctors, etc will not really think about the elec stim they think it heal on it's own if at all, I had to discover this and ask for it myself...only make sense, nerves send messages on a current, every step of the way, I had to guide the doctors until I could find one that we could work togheter.

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    2. It took 3 months after the stimulation to see the slightest movement in my upper lip - and I mean slight, this was after the neurologist said I would never recover, since I could always feel that side of my face pulling, I would suggest work on the mirror method, but also he should turn away for a moment, touch a spot in his face and try to feel the slight touch, to get more aware of his nerves, then look at his face and try to retrain his mind can start to recognize and connect those areas.

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    3. I thought my eye would never close again, in fact they wanted to put a gold weight in my lid, but what I just described to you helped me enormously I touched and close my lid, but all of my awareness to it, repeated repeated until I could slowly do it. It was absolutely out of sync for about 5-7 years just slower then the other one..but i's pretty darn good now.

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    4. AS far as the other HUGE part of this puzzle - Lyme, the neurologist is not a Lyme specialist, and many Lyme specialists or infectious disease docs go with standard guidelines which is about 4-6 weeks of antibiotics and not enough especially if he has had it for over a year.

      Does your doctor know about co-infections?
      Do they know about integrative medicine?
      Meaning there needs to be integrative support, immune builders, vitamins, etc because Lyme depletes and steals from the body, the other thing steroids help with the pain of the BP but also helps to create a good environment for the Lyme

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    5. another reason why only 30 days of antibiotics just doesn't work unless you catch it early is the Lyme bacteria creates a cyst and hatches when the host conditions are right, it can goes in cycles some hatching and others not even when on an antibiotic such as doxy, it might become ineffective or the dose may not be strong enough and other antibiotics come into play, Azithromax, Ceftin, etc and again if he has a co-infection which most often comes along with Lyme that could require a different antibiotic such as Mepron
      You might want to do more investigating on other Lyme doctors in your area just to help get more information. Best wishes and let us know

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  55. WOW! Im so happy to find a forum about bell palsy where people can actually talk. LOL. I had BP back in 2010 on my right side. I was hard headed and tried the antibotics the doctor gave with the steroid. The steroid made me sick, so i stopped taking it. BIGGEST MISTAKE. I did not fully recover :( My right eye is a little smaller than the other, Little numbness on the corner of my mouth, lots of tension in my neck off and on. Is this normal? When my anixety flares up i really notice it.

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  56. I have had bell palsy for 18years I contacted it when I was 3years old , it is ceriously affecting my teenage life can I be treated?

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    1. Dear Chizu, I am so so sorry to hear that, not everyone is kind and I'm sure it was very difficult growing up with it. I wish I had other words of wisdom and information or some kind of magic pill that I could share with you.

      I know sublingual B12 helps for nerve regeneration, but it's been awhile (never hurts) acupuncture and electrical stim were helpful. The people that love or care for you will see past it, pictures seem to catch us at our worst, even if we don't really look that bad. Have thought could plastic surgery help, but there are so many nerves involved, I'm just not sure about that.

      I have thought would Botox in the unaffected side balance everything out or would it help to minimize the over compensation of the muscles in the unaffected side. If I find anything out I will let you know, keep us posted. Wishing you all the best Birgit

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