About this Section: I receive at least ten emails a week from real people who are having or have had a Bells attack. Most are reaching out because the Medical Staff really doesn't have much to say except take your meds and wait. This section contains emails from fellow Bells Alumni on certain issues they have run up against may help you understand you are not alone.

* These are account of others and they carry no medical backing or are endorsed by this site. If you are contemplating using any new method please check with your MD.

Feb 8th 2005 from Dana

How come it took me 5 freaking months to find this amazing website?? Anyways - I got BP in August 2004 - thought I was having a stroke - went to the er - had MRI - and told I had BP - given a prescription for prednisone and acyclovir and sent on my way - I had never even heard of BP - I was FREAKED out - I'll admit I was a little vain before this happened - now I'll admit I was a LOT vain - I couldn't stand to look in the mirror - my face was so dead it felt like it was falling off my face - I actually used butterfly bandages to try and tape my face back in place just so it wouldn't feel so bad - the pain - omg - the pain in the bone behind my ear - holy crap it hurts - leading me to question #1 - does this pain every go away - I feel it off and on as a sharp stabbing pain - and sometimes it's more constant - My neurologist gave me neurotonin for the pain and it does help but I just wondered if it's here to stay - It always scares me that the BP is going to get worse again. The weird/scary thing is my face is much better - it's been a long process to me but once I could close my freaking eye life was better again - it seems the muscle that makes you have an apple on your cheek is the one not working - for some reason when I smile the left eye - my affected side -looks smaller - when I yawn it closes - pretty sure it's synkinesis but leading #2 does that mean it will always be that way? and question #3 is how long can you continue to have recovery? - I want my face back - !!! I'm sending you my website.

Visit My Website

with my pictures on it so you can see how it's progressed and I'm attaching my latest pic since for some reason AOL won't let me add it - I just need to know if this pain is going to ever go away and if there's any hope I can have more recovery - oh and the muscle under my affected eye is constantly violently twitching - will that ever end??

Dana Beech

From: Brenda2ss@sbcglobal.net 4-5-04

Hello Jason,

Thank you so much for sharing your information and efforts toward the very
nice website.

I also have a story. Five times I have had Bell’s Palsy. I have put my efforts toward fight the condition in a website as well as obtaining training in CranioSacral Therapy and Massage which has been my saving grace.

Just wanted to say hello and connect.

Take care,
Brenda Tubbe
www.2ssolutions.com/brendaCMT/index.html

1-18-04

Hello Jason,

I was inflicted with Bells Palsy in May 2002 with the left side of my face drooping as usual,also my left eye was stuck open for approximately 5 months.A dryness in the eye is what caused the eye to water ,also it waters all the time when I eat anything.
Today is February 2004,and my left eye still waters but I am able to now close it but I can certainly feel the abnormality of my facial features to this day,it seems as though my face in the upper quadron is still a little numb and my smile is no wheres near what it used to be ,although my speeech is alot better I also have some trouble with that also.I have to admit that I have gotten much farther than when my speech was very slurred and I also had to drink thru a straw.People used to stare at me with uncertainty as to what was wrong with me,but I usually just explained what happened to me and naturally most people were stunned but accepting.I have since gone back to the emergency room in Syracuse N.Y. to thank the doctor ( Dr. Baraz ) for knowing the symptoms of the disease and assuring myself that I was not having a stroke as I thought that I was having as many people do, I did that on the one year anniversary of my illness and the doctor certainly remembered me because there isn't to many people that he has treated with the disease,but told me that on the day that it happened that I was a true trooper.Please feel free to get back to me with any questions or comments or even if you have anyone else in my area that needs a few questions answered,I would love to help,as when it happened to me I felt very uneducated about it , but as I spoke to people and researched it I have learned much more.

Jon Perrigo Syracuse N.Y.

7-5-03

I've decided that Bell's Palsy and flying are a little bit alike. There are seemingly interminable periods of time when nothing - absolutely nothing - seems to be happening. Then, in the case of flying, something that may be life threatening intrudes for just a second. On the other hand, Bell's Palsy offers a brief and fleeting moment of something that might actually be encouraging. In either case, it's hard to tell how significant a little movement might be and there's a limit to anyone's ability to control the situation.

I've had almost 2 weeks of physical therapy sessions where nothing much happened. My depressor labii inferior, my zygomatic minor and my frontalis just weren't consistently responsive to the e-stim machine. The depressor labii inferior has been a source of concern for a while, and I suddenly realized that I hadn't been doing much for the frontalis.

It was depressing. Even worse, was the realization that my improved muscle tone in my face has nothing to do with indications of nerve regeneration. My face doesn't droop. As long as I don't talk, I could just pass for a stone face.

To make it all worse, I finally understood that response to e-stim is muscle working, not nerve working. So, while I may not look that bad, and I can talk fairly well, the Bell's Palsy is still severe. All those people who say, "You look better," aren't saying anything meaningful. The person who said, "Well, since your face isn't drooping, you must have a mild case" was truly ignorant.

Sometimes, being polite is harder than it looks. I can't open my mouth wide enough o bite off anyone's head, so I haven't. I've just wanted to scream, "Don't you idiots realize that my face is 100% paralyzed? It's not getting better!" So, any family on this distribution list: you better be proud! I kept quiet!

Then, I discovered.........the Steam Room! After an hour of swimming, a few minutes in a nice, steamy steam room let's me do alternating winkies - even when I'm standing up. The effect of the steam doesn't last all day, but a visit to the steam room is a good reason to drag myself out of bed in the morning.

Just the other day, I thought I saw a little movement diagonally to the right of my mouth. My speech therapist confirmed it. I have volitional movement! Okay, it's in the "trace" range of motion category, but it's in the range of motion category.

Yesterday, I went to visit a chiropractor / acupuncture therapist. Insurance doesn't cover this one, but if there's a chance it'll help, I'll try. The doc thinks she can help the Palsy, but even if she doesn't help that, she's sure she can do something for the femoral patella disorder in my knee.

Knowing that I'm a bit nervous about needles after that visit to the sadistic neurologist, Doctor O a.k.a. Linda told me about electronic acupuncture. It may not help, but she swears it won't hurt.

Today's visit to the rehab center confirmed movement in the frontalis and some as-yet-unnamed muscle in the middle of my cheek - close to the masseter muscle. Who needs fireworks on the 4th of July? I was happy with 3 moving muscles, even if they're showing "trace" range of motion.

And that's the way it is...after 48 days in the Land of Bell's Palsy.

By Nancy S.

My Name is Deborah and I came across your site On April 12, 2003 after being diagnosed with Bells the day before. I found the testimonials wonderful, and would hope that you would post my story for a number of reasons.

1. The testimonials did not explain the initial feelings of shock, panic & fear at the onslaught of Bells Palsy.

2. I had a very quick recovery and feel that hope is a great motivator.
3. Not many of them covered the terrible emotional stress and depression.

I woke up on April 11, 2003 feeling a bit strange (I had drank a bottle of wine the night before with my boyfriend) I thought jeez, this is quite the hangover! I had double vision and was off balance. I ignored the symptoms for weeks, and continued to do so that morning. Prior to the actual facial paralysis, I was experiencing a twitch in the right eye, had a bout with vertigo approximately two weeks before the actual paralysis and an incredible lack of concentration.

I continued my morning as usual, showering running to catch my train etc. Upon arriving at the office, I had numerous employees coming into my office to ask me if I was ok, "I'm fine" was the standard response and off they went. Had I only taken a moment to have something to drink or look in a mirror, I would have noticed that my face was completely twisted!

By 1:00 p.m. that day, I finally made it downstairs to have lunch, went to take a bite of my sandwich and bit my lip! I proceeded to run upstairs to the bathroom I could not believe what I saw, the right eye would remain open while the left one blinked!! Holy Cow!! When I tried to press my lips together they refused to meet. "I'm having a stroke!" (I'm only 33) There was no convincing me otherwise, I ran out of the office and through the streets of NYC trying to figure out where was the best place to go (hospital in NYC or Westchester, where I am from). I ended up getting on a train, slept 45 minutes and arrived at my local train station where I then drove myself to the hospital.

Emergency was like being on a conveyor belt, they seemed to have a menu of items for me e.g. brain scans, chest x-rays etc. When I finally
spoke with a doctor he told me, "Let's hope it's Bells Palsy" you can't imagine the shock to hear that he hopes that I am going to have a virus for 3 - 4 months that could lead to permanent facial paralysis. I was actually hoping that it was the brain tumor - that way they get in they take it out my face goes back right? That is how disturbed I was, that I was actually hoping for a brain tumor at least I would have then had an explanation! As it turned out I do not have Lymes Disease or any of the other possible causes for Bells, so I am left to live with the constant "It's going to come back".

So, I left the emergency room with my handful of prescriptions, the usual (predisone, valtrex, & docycylene) and went home to hurry up and wait. Over the next few days, the depression began to set in, I completely refused to leave the house, and would not eat in front of anyone other than my boyfriend. Within 3 days of being diagnosed, I was already looking into different surgery's that they could perform, etc. By the second week, I told my boyfriend that it was going to have to be "over for us" if I remained paralyzed, I was going totally insane! I would sit in front of the mirror for hours willing my face to move the slightest bit.

As it turned out, I have had the quickest recovery that I have yet to read about, within 4 weeks I was approximately 95%, today 7 weeks later, it's almost completely undetectable to me.

Here's what I did:

Chiropractor every day for the first 14 days then 4
times a week (down to once a week now)
Vitamin B & L-lysine twice a day
Hey - I don't know if you are going to print this part or
not, but it helped me calm down:
Smoked some marijuana - yup - probably 6 - 7 times
that first 3 weeks - just a little :)
Had a few sips of beer - yup - again not much maybe
a ¼ of a beer.
Made love everyday! - Yup - I was told by the doctor not to stress - what better way to reduce stress? I had a wonderful support system of family, friends and the love of a great man throughout my experience, I am truly grateful to each of them. I am not sure if my story is going to help anyone, if anything I hope that you recognize that there are a few quick recoveries out there!

Stay Healthy!

Deborah

Hi!

My reason for writing is simply to share my story with others in similar situations, so they to will not feel alone. Through all of this, that isolated feeling has been the worst, and your website made a real difference. Each person's experience is different, and from each shared experience people gain something. I hope you will keep this in mind when deciding whether to share my letter with your readers.

I have had Bells Palsy twice. My first experience was in Aug. 2001. I woke in the morning to find that my right eye didn't close. I wasn't too concerned, however my husband wanted to go to emergency right away. While in emergency waiting to see a doctor, things started to deteriorate rapidly. My cheek was now numb, I couldn't lift my eyebrow at all, and my mouth had started to sag. After the doctor performed a few simple tests, I was told I had a virus called Bells Palsy, was given a prescription for Prednisone, and sent on my way to do research myself. People always write about the physical changes that one go through with Bells, not the emotional ones. After taking the prednisone, you cannot do much about the physical problems, but are left to deal with all the feelings of horror. It is a very traumatic experience. We are afterall our own worst critics. I was a person who wore contact lenses, and only wore glasses at home. I now had to dust off the glasses and expose that part of myself, along with the physical changes to the world. Some people never noticed anything was wrong, they just thought I looked so different in glasses. You don't realize just how vain you are until something happens with your looks. It really gets you right to the core of who you are in minutes flat. There was a perk though....I could now tweeze my eyebrow painlessly! Three months later things were almost as they should be, and the only leftover was numbness between my nose and mouth. If I rub my nose too hard, I give myself a bruise. Oh well, I can certainly live with that.

Then in Oct. 2002, I woke up with Bells Palsy again, now on my left side. This time was much worse than the first time, which seems to be common among second timers. I went to emergency again, and received my prescription for Prednisone, ( a much heavier dose than the first time) and went on my way to wait. I thought that the symptoms I woke up with was the extent of it, but I couldn't have been more wrong. My face sagged considerably during the day, and my mouth reacted like I had dental work done. My tongue was several times too big for my mouth, and when I smiled you could only see three teeth at the back. I couldn't drink out of a glass without drooling everywhere, and food didn't have any taste at all. My eye caused me a lot of problems this time also. It was drying out all the time. I had to put a patch on it during the day after being up for about two hours, and tape and patch to go to bed. My ears were very sensitive to noise also. I became really scared that the steroids weren't helping and made another appointment to see the doctor. They decided to send me for a CAT scan to rule out the possiblitly of a tumour. It was Halloween day, and I was in the hospital getting a CAT scan. The patch was fitting for Halloweeen day, but that was it. There was no tumor, so off I went. I had no energy this time whatsoever, it felt more like a bad flu, and a lot of pain in my ear and cheek.

Well, it has been five months today and a lot of things have healed. I am so fortunate to have a wonderful loving and supportive husband and son. They consistently told me I was beautiful even when I didn't think I ever could be. They kept me laughing, even at myself, and I think that was the most helpful in my healing. I have celebrated with my family every new tooth showing in my smile, every new twitch my face makes, and I can wink at my husband now, and raise my eyebrow in question! I am still having trouble with my eye while working on the computer, and still have to tape and patch during the night. I have good days and bad days, which seem to depend on how much rest I am able to get. I am probably 90% recovered, and still hoping with a lot of love, laughter and patience to recover completely!

Cindy Matwichuk
Port McNeill, B.C.
Canada

Hi,

I saw your website, and thought I would share my story with you too. I am 26 years old, female, and had bells the first time when I was 19. It lasted about 2 or 3 months, then I recovered 100%, that was the left side of my face. Then in Sept. of 2001, I had bells again, left side of my face, it recovered 100% in about 5 months. Both times I began predisone within a few days, and the second time, I had acupuncture one time within the first week. In January of 2002, I got bells on the right side. I started predisone within a week, and as of now, am still only about 80% normal on that side, and I do not see it getting any better. There are days where I do not think about it at all, then I will look in the mirror and still think I look like a freak. Luckily, I am married to a great guy who loves me for me, not my looks, and tells me all the time you cannot even tell, even though I know he is just being nice. My smile is still crooked, my eye still squints weird, and my chin points in a strange direction when I smile. But I am surviving. I always tell people, I'd rather my face be paralyzed, rather than my legs! I am hoping for a miracle, and maybe one day it'll happen, but for now I just live my life, though I still pop those B12 pills every day! My advice to anyone who has this is not to worry, for most people it goes away completely, but if you are not so lucky like me, you learn to live with it. Things could be worse. Lets just pray I do not have a 4th time!!!!

Roschelle in Ohio

From Kevin 10/31/02

It has been encouraging to read that someone else has had it two times. My doctor told me that in the 30 years he has been practicing, he has never seen anyone with it twice. This was hard for me to believe, since I am never sick and have never had a cold sore. I'm 39 and in excellent health. My wife and kids are constantly sick w/the flu and colds and yet I never get either sickness.

The first time I got Bell's was a year ago, which some attribute to my buying a Vespa Scooter. I'm not too sure on the wind thing, but who knows? I was completely recovered in 3 weeks with no signs I had ever had it. This time is different. Since I knew what it was when it came on, I didn't go to the doctor and figured it would be gone in 3 weeks and I would just have to deal with it. The Bell's was on the opposite side of my face this time. I started a regimen of vitamins and herbs for the immune system almost immediately, opted out of using Predisone (I now think a big mistake on my part). I was under the belief that it is not sure if Predisone does anything, but my research as of late seems to prove otherwise. I have read some studies of 100% recovery in 100% of the cases that started Predisone within 24 hours of onset. If I had it to do over again, I would speed to my doctor and get on the stuff as fast as possible. I thought you might want to relay this to your readers.

It has now been exactly 5 weeks and a day and I have not seen one sign of improvement. For the past week I have gotten 3 acupuncture treatments(one being cold laser) and still nothing. I have no twitching or movement of any kind like I did with the first case, so I'm a little discouraged. Also, I have been putting wet heat on the affected side once a day. The funny thing is, this case was not as bad as the first time in symptoms, other than having pain. I did not have any pain the first time, but had allot of difficulty with my eye and use of my mouth. I believe the pain I experienced this time must be one of the determining factors. I relate this to the belief that there must have been more swelling and damage done to the nerve to cause pain. The Predisone may have kept this from happening the first time.

Kevin

From Richard

Hi,
I first learned that i had bells palsy after i had an operation to remove my wisdom teeth . I had the operation on 13th march 2002 and after 2 months (around 10th may 2002)i started feeling allot of twitching around my left face and below my eyes and upper lips . Before i knew it my left face was dead,no movement, at all. ……. ……. i started :
? - feeling irritations on my left eyes and I could not blink or wink and my right eyes controlled my left eyes .
? - I could not smile ,laugh or make facial impressions.
? - my left eye could not shut day or night, and it appeared red.
? - food was getting stuck inside my mouth between my cheeks and gum
? - some pronunciations or words beginning with letter B especially were not coming out properly.
? - My ears were extremely sensitive to sound,even the smallest sound seemed amplified.
- This carried on with no sign of recovery . I was informed by the hospital that after my operation there may be reactions so i thought it was just that. i decided to go back to the dental hospital around 15th may 2002 to get checked. This is when i was told i had bells palsy:
i immediately started finding more about BELLS PALSY via the internet which to me was the best ever resource . I went to see my doctor who had no clue about bells palsy,if anything i was the one educating him.
he prescribed me steroids; that's all he did; i started by buying vitamin B tablets, massaging my face with oil,massaging my face with hot/warm water every day and or my eyes which could not close i kept it moist by eye ointment . I heard about people sealing theirs eyes at night but i didn't do that . I also kept checking the progress via a mirror and kept positive. Being positive is one of the best cure for bells palsy and believing that you will recover . I was extremely scared because i didn't see any improvements until around september 2002 when i felt a little muscle twitching!!
Here is what i did everyday for at least 6months:

1- make circular moves with your finger around your face cheeks.
Make small Pinching actions in all the areas which are dead , massage above your eyebrows up and down.
2- massage your face with hot/warm water with a piece of cloth.
3- massage face with vegetable oil or any type of oil.
4- using a pen tip to make gentle pricks on my face after a facial massage to stimulate muscle growth . I felt this brought about a lot of small twitches !!
5- making facial impressions like ‘surprise’,frowning, staring up and staring down
6- trying to smile in front of a mirror.
7- forcing my eyelid shut with my finger and trying hard to open it without the help of my other eyes . I felt that this brought the best result towards healing my left eye.
---- ------ -------- -------- --------- ----------
• I started getting a lot of involuntary muscle movements and irregular twitches here and there.this convinced me that I was indeed recovering.!! I tried to balance my face when practicing how to smile and tried to use my weaker side of my face more.the best day of my life was when I was able to close my left eye and also I winked .i knew it was only a matter of time before I smiled again properly.
• its nearly 8 months now and am almost there,I would say 98% back . I don't do as much facial massage as before but I do it once a week or so.
• I learnt that everybody is different when it comes to bells palsy;some people recover faster than others.mine took nearly 8 months,I only started seeing signs of recovery after 4 months.some people recover within 2 weeks ,so don't WORRY,just BELIEVE that u will recover.
• I also carried on doing everyday things I used to do even though I tried my hardest not to laugh because my face looked deformed.
• In my view,DO NOT RUSH TO DO FACIAL SURGERY like some people do,it will only make it worse.
* All in all I felt that believing that you will recover and being positive and facial massage were the reason I personally think I recovered .i hope this helps some one . Thanks richard

*DISCLAIMER The intent of this website is to provide a general background about Bell's palsy, and to help define areas the reader may choose to further investigate. It is based on extensive research, but the timeliness and accuracy of information obtained cannot be guaranteed. The site is not an attempt to practice medicine. It can not used as a substitute for medical diagnosis or treatment, nor should this information override any decisions made with a qualified health care provider. All readers are strongly advised to consult with a qualified health care professional You assume full responsibility for use of the information at this site, and agree that the authors and contributors to the Bell's Palsy Information Site, its associated information, pages and links hold no liability to you for claims, damages, costs and expenses, legal fees, or any other costs incurred due to or in any way related to your reliance on anything derived from this web site or its contents.