Introduction

Hello and Welcome! Since you are here I am assuming you have Bell's, know someone who does or have a general interest. Whatever the reason, I'm glad you've come to visit.

There are some wonderful sites and information already created and available on the Internet and I don't intend to duplicate any of that information. What I want to accomplish with this page is arrange it in a way that flows logically and provides information, answers questions, relevant links, talks about options and provides support to those who need it. The areas I've focused on include:

The Internet is a wonderful source of information and support. However, be careful with whatever information you find ~ including this page of mine. Information should not be considered medical advice or expert opinion. Many people have taken the time to put information out on Bell's, some in the form of research and studies and others with their experiences. My page will attempt to link you to as much as I have been able to find!! It will also offer my personal view on many areas associated with Bells as well as from the many contacts I've made on line. Again ~ take it for whatever you feel it is worth, the intent is good, the information may be helpful. Learn as much as you can, get professional advice and make your own choices in your care and recovery.

One more thought before I get started ~ Bell's is very individualized. The experiences of people who have had it are very often not the same. There is no absolute norm that I have seen, either in my two episodes or from what I have heard from others. Duration and symptoms other than the muscle paralysis/weakness and dry eyes vary greatly and the intensity of symptoms also has great variances. Keep this in mind please! Just because someone else had or saw a symptom does not mean you will and your experience may be different as well. Also, you'll talk to a lot of people who have known someone with Bells ~ Aunt Mary or the postman ~ they mean well, but don't let them make you feel like you're doing it "wrong". Maybe Aunt Mary didn't have pain or was fatigued or beat it in 2 weeks, but it doesn't mean diddly ~ except to Aunt Mary. Follow the words of Frank and Elvis and do it your way!!

Our link ~ yours to me, ours to the other 40,000 this year that will get it ~ is having Bells and understanding the physical and emotional challenges that come with that. I care, many do. Please use this information and the links to help yourself and others. If you'd like to get in touch personally, please feel free to e-mail me with the button below. I like connecting and sharing.

General Information

What is Bells?

Bell's Palsy is a form of facial paralysis or weakness resulting from inflammation or damage to the 7th (facial) cranial nerve. This nerve comes out from the brain just in front of the ear and goes to the muscles of the entire one side of the face, thus affecting the eye, cheek, and tongue. The paralysis or weakness can be sudden or worsen slowly over 2-5 days. It usually affects one side of the face, though it may affect both sides. The paralysis or weakness produced by Bell's Palsy may be temporary or permanent. Most people do not have a recurrence, however, others do. I have had it twice. It is named for Sir Charles Bell, a Scottish surgeon and physiologist, for his work on facial palsy. In 1821 he demonstrated that the facial nerve was a separate nerve.

What causes it?

The specific cause of Bell's Palsy is unknown. It can strike almost anyone at any age. Researchers recently identified the common cold sore virus, herpes simplex 1, as the likely cause of most cases of Bell's Palsy. It has also been suggested by various sources that it may be associated with the following: diabetes, a viral infection, a flu-like illness, high blood pressure, trauma, toxins, lyme disease, Guillain-Barre syndrome, sarcoidosis, myasthenia gravis, stress, high winds directly into the eye, trauma to the facial nerve, poor nutrition, dental work and chronic middle ear infection. Pregnancy is not a cause but it's been reported that a high number of pregnant women have gotten Bells. It has also been suggested that it can be inherited.

My theory is that for whatever reason certain people are susceptible to Bell's, it could be the cold sore virus - it could be something else that causes it. Then certain things can bring on an episode - stress, toxins, winds, nutrition, dental work, whatever. In my case I think it's stress. The cold sore virus is something many many people have whether they show the symptoms or not. Once you have it, you have it. Stress can bring on an outbreak of cold sores. I had this before both occurrences of Bells. This certainly does not mean everyone who has stress or even cold sores will get Bells. That's part of the frustration, the cause has not been positively identified. I think it's a combination of things and to a certain extent - luck of the draw. Why does anyone get anything? It happens, and rather than spending time on "why me" I think it's healthier and more productive to get as informed as you can, make whatever choices are best for you, stay calm, stay positive and heal.

Symptoms

sudden one-sided facial paralysis or weakness
inability to blink or close the eye
facial twitching
dry eyes
tearing (crocodile tears)
pain - in the back of the head, ear, behind the ear, the side of the face affected
drooling
hypersensitivity to sound
dry mouth
impairment of taste
affected speech
numbness
fatigue
dizziness

Remember, you may have a few of these or hardly any and certain ones will be the major symptoms. I have not personally had them all but the main ones for me have been the pain and fatigue - both times.

Other Links for More Information

Here are a few of my favorites - you can get an expanded list of good general information links by pressing the Links button below.

Bell's Palsy Network - Excellent source of information - wonderful FAQ page and the Forum is a must!

Bell's Palsy Info Page - Excellent information Sponsored by: The National Centers For Facial Paralysis, Inc. "Specialists in the Rehabilitation of Paralyzed Facial Muscle"

Facial Nerve Disorders - A group of ear nose and throat specialists offers an on-line brochure from The American Academy of Otolaryngology on Bell's Palsy and other disorders of the facial nerve.

MORE

Treatment

There is no standard treatment for Bell's Palsy and everything seems to be controversial. Some will swear certain things help and others who've tried it will swear it doesn't. It gets back to Bells being so individualized. Here are some thoughts and information I've accumulated through experience and research:

Doctors ~ find one you are comfortable with, who seems to know about Bells, cares you have it, and is willing to work with you on possible treatment options. Don't be afraid to demand good care and keep looking until you find a doctor who wants to help and is knowledgeable. You deserve it! If your doctor seems to want to rush you out, get's an annoyed look after a few questions, tells you to tough it out, or is unwilling to discuss options - MOVE ON! There has been a lot of talk from people with Bells about the Dr. Dolittles out there that just seem to make the experience worse. If you have a Dr. Dolittle ~ find someone else. I had one of these the first time and decided the second time around to do better for myself.

Also watch out for the Dr. Killjoy's, I've heard from a lot of people who's doctors have set them up very negatively by telling them not to expect any change for at least a month or two, that their recovery would not be 100% (by just looking at them), etc. While these may possibly turn out to be true ~ I don't think it's fair or right for them to put this negative structure around your recovery. We've all heard the stories of people who have proven the experts wrong by walking again or recovering from something beyond everyone's expectations!!

Lastly, if the diagnosis of Bell's was correct there is not a whole lot doctors can really do. My first time, I saw one every week (at his request) which was just expensive and not at all helpful. The second time, I said ok I'll check back in a month ~ then went and did what I felt was best for me and my healing. It's important to be informed and make your own decisions ~ you know what you're comfort level is on any option and when you should seek assistance and advice.

Eye Care ~ This is very important. The eye does not blink and dries out quickly. Although you may be able to close your eye, it may not close all the way or very tightly so night time protection is especially important. Some tips: Use moisture drops during the day and an ointment at night. I've read a lot about the brand Bion Tears giving the best relief during the day and LacriLube at night. Use your finger to manually blink your eye during the day. Some use and recommend eye patches or tape to keep the eye closed at night others recommend not doing this because it may scratch your eye. Some have used plastic wrap over the eye to create a moisture chamber - again be careful. I did use a small non-stick gauze pad and tape to ensure my eye stays closed at night - the paper tape is much gentler to the skin!! I've also heard from someone who got an eye plug from her opthamologist so that the tears stay in the affected eye. She said it was a collagen plug, quick and painless and that it is supposed to melt away on it's own in two weeks but has given great comfort in that eye.

Facial Exercises - Exercise every muscle in your face, even though it may seem like there is no movement. Do this often and do it in front of a mirror to notice any changes. Some people also keep a diary of their progress. Exercises include: wrinkling your nose, curling your upper lip (as cool as the Elvis impersonation looks - really try to curl both sides!), raising your eyebrows, squeezing eyebrows together and down, pucker up, open your eyes wide, close your eyes very tightly, stick your chin out, transfer air from cheek to cheek, show your teeth, smile, pout, grimace, go through a wide range of exaggerated facial expressions, drink through a straw, try to whistle, do your Incredible Hulk impression. Here's a good link for facial exercises Mindspring.

Massage your whole face. Use some moisturizer and just massage it all in. If your face hurts on the affected side - still try massaging it lightly until the pain subsides a bit. The heat from your hand will help as well. Although a deep massage does hurt, I think it helped me quite a bit. Full body massages are great as well ~~ very relaxing!

Temperature ~ Stay out of the cold and wind. Breezes and cold can cause more discomfort. This is a little tricky in Alaska in the dead of winter but I wear a hat and limit my time outdoors. Heat has really helped me with the pain - heating pads, the heat from your hands, warm wet compress, spa, sauna, Hawaii, etc. Those microwavable heat packs are great too - you can make one by filling an old sock with rice and heating it - keeps the heat for a while and feels very good.

Relaxation ~ This is a soap box item for me because it is so IMPORTANT!!! Just as I believe stress can be a factor in the onset of Bells, I believe it can also play a role in the duration and intensity. It's easier to say ‘just relax' than it is to do it, but find a way. Whatever works for you. Take time for yourself, soft music, walk, work out, prayer, positive visualization, meditate, do yoga or T'ai Chi, or get a full body massage. All of these work for me! I also believe you can learn something from every experience - Bells has taught me greater patience and acceptance, it has taught me to look inside myself and know me, what I need, what makes me feel better and also to trust myself, my thoughts, my wisdom, my strength. Ok ~~ *stepping down from soap box*

Some favorite books on finding the inner peace include - Mindfulness in Plain English, by: Venerable Henepola Gunaratana, Full Catastrophe Living - Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness, by Jon Kabat-Zinn, Wherever You Go There You Are by Jon Kabat-Zinn; If Life Is a Game, These Are the Rules : Ten Rules for Being Human, by Cherie Carter-Scott; Inner Simplicity - 100 Ways to Regain Peace and Nourish Your Soul, by Elaine St. James; Simple Abundance - A Daybook of Comfort and Joy, by Sarah Ban Breathnach, Anatomy of the Spirit : The Seven Stages of Power and Healing, by Caroline Myss and anything from Norman Vincent Peale.

If you've never visited Amazon.com ~ check it out ~ it's a great site of Books, Music and Videos.

Drugs ~ Some physicians may prescribe a corticosteroid drug (often Prednisone) to help reduce inflammation and an anti viral medicine (Acyclovir, Valcyclovir, Famvir) to help fight the virus. From the reading I've done, there doesn't seem to be consistent acceptance of one or the other or either treatment. Although those that favor prescribing steroids, believe a short course of a cortisone-type drug like Prednisone will speed up the recovery, be also believe it is helpful only if started within a few days of the beginning of the paralysis. As with any drug, there are side effects, I didn't experience them but others have had a difficult time.

Here's a few of studies that were posted on the use of these medications.

Bell's Palsy Treatment with Acyclovir and Prednisone Compared with Prednisone Alone: A Double-Blind, Randomized, Controlled Trial Article

Thriveonline Study Double-blind study, they compared the final outcome of 99 Bell's Palsy patients treated with either acyclovir-prednisone

Healinfo Information on a study regarding the use of prednisolone.

I did not take any medication the first time I had Bell's but this time I did take Prednisone for a week right after I was diagnosed the second time. My recovery was twice as fast as last time. Was it the steroids....... other things I'm doing for myself...... or just a milder case of Bells......I can't say for sure but I will say that if I get Bells again I will be taking the steroids again.

I would like to provide more information on these drugs and am trying to find a link on-line for a full description of these drug as well as possible side effects to help people make an informed choice. When I do, I'll link it here. For now, I've found some information on Prednisone at the DrugInfo.Net.

Nutrition / Herbal Remedies ~ This is another big and important area as far as I'm concerned. the body functions better and heals faster when there is good stuff going in. Junk food was a bad idea before you got Bell's and is even a worse idea after ~ your body is trying to heal. There are foods rich in the vitamins and minerals necessary to reduce stress, decrease episodes of the virus and promote healing and these should have a significant place in your current diet. I have been doing some research on nutrition and herbal remedies. I used many during my last time with Bells and think it made a huge difference.

Important items during healing include understanding that when the amount of lysine present in your body exceeds the amount of arginine, the growth of the herpes virus is inhibited. Take Lysine supplements to keep your levels high. Also avoid foods high in arginine (chocolate, coconut, oats, nuts, peas, chicken, corn, dairy products, and seeds, white flour, wheat). Eat foods high in lysine - eggs, fish, lima beans, potatoes, and soy products.

Other things that help - Vitamin B complex, Vitamin C, multi-vitamin, acidophilus, Garlic, Calcium and Magnesium, Herbs (goldenseal, echinacea, pau d'arco, cayenne).

Positive Attitude ~ You must believe you will recover and do all you can including being informed, calm, and positive. Bells has been compared to a roller coaster ride (but then so has life) with ups and downs. The best thing for recovery from Bells as well as the emotional turmoil is being positive about who you are and how you are and accepting what you have to give. Bells seems to do what it wants when it wants. You do have control over your attitude, knowledge of what you can do and acceptance over what is not within your control.

Acupuncture ~ I have not tried it personally but I have heard from many people who have had great success with it. Here is one site from The NeuroWeb forum at Harvard University , it provides a patient account of a positive outcome in treating Bell's Palsy with acupuncture.

Electro-Stimulation ~ Another I have not tried or know much about but others have used it with varying degrees of success. It's something to look into or ask your doctor or physical therapist about.

Chiropractic Care ~ Several people I've talked to have had very good success with regular chiropractic care. It's another option.

Surgery ~ I also have no experience with this and rank any surgery right up there with spiders and dentists in the terror category. I did find this one site on Eyelid Surgery in Facial Paralysis (Bell's Palsy). Also here's a paper you should read if you are considering decompression surgery for the facial paralysis. I have heard about surgeries where they stitch the outside corner of the affected eye to pull up the lower lid that was droopy and another option is to apply a gold weight to the outside of the eye lid to weight it down so it will close better. I think any surgery is very drastic and only as a last resort after months of trying everything else you think will help.

Humor ~ you can't take any of this or yourself too seriously ~ laugh, be with friends, give yourself mental adjustments from time to time. Look on the bright side when you can ~ in one of the pages I visited and I can't remember which one right now, there was a quote from someone that a positive side of Bells is that when you are driving and you sneeze - you can now keep one eye on the road!!

You won't always smile like this ~~ ~~ but this is even kinda cute!

Recovery

As I mentioned earlier, many people recover from this quickly and totally. I recovered 95% from my first episode. I just have some facial weakness on the left side when I'm very tired and a slight hearing loss. I began to get some muscle movement in just under 4 weeks and by 6 weeks I pretty much was back to normal. The second time has been much quicker. Recovery started within a week, whistling at 2.5 weeks and full recovery by 3 weeks. As I said, it could be that it was a milder case or it could be learning from last time and being more informed and taking better care of myself.

However, I know I have been lucky with this. There are others who have had it for months, even years. Some never recover from the paralysis and others recover but not fully. Although you can't control this, you can control your emotional recovery. Have a positive expectation of success, although success may need to be redefined. You are not your illness/condition. You are a person with unique talents, strengths, intelligence, and feelings who had a life before Bells and will have a good one after Bells regardless of the degree of physical recovery.

It is best to not put a timeframe on your recovery. It's normal to have expectations but Bells seems to have a mind of it's own ~ you'll recover in your own time ~ you just don't know ahead of time what that is. The balance is, I guess, having a positive expectation of success and a strong belief system but not setting recovery goals or expections for muscle movement that can cause disappointment or depression. However, you can take an active role by eating healthy, doing your facial exercises, doing whatever it takes to relax, exploring options, etc.

Recovery Signs and Milestones. As you start to recover, rejoice at each and every muscle twitch ~ twitching is a wonderful thing!!!! Sometimes you can feel a muscle move or pull but not see it, but when there's this little twinge where before there was absolutely nothing - pure joy! Other signs include: pain diminishing, having more energy, seeing one more tooth in that wonderful smile of yours, being able to give a 'whole' kiss!! and my personal favorite, being able to whistle again!!! Another great sign ~ when a day finally arrives where you've gone the whole day and not even thought about Bells.

Support

Here are some great support systems:

Bells Palsy Network I put this link up before but do so again because it has a forum page that is wonderful ~ great people, great information! It is a good place to ask questions, share experiences, get support, give support or just help you realize you are not alone.

Neurology WebForums Sponsored by Massachusetts General Hospital. They have forums on many conditions including Bells. This one doesn't appear to be as widely used but still it has good information and is a good place to go.

New Member Forum. Great site with a new Bells member forum and many good links and information.

The Bell's Palsy Research Foundation is a national network with information and support available:

Email: bellspalsy@aol.com

Bell's Palsy Research Foundation
9121 E. Tanque Verde, Suite 105-286
Tucson, Arizona 85749
Phone: (520) 446-3985
Fax: (520) 749-4614

Here are two sites where gentlemen with Bells kept an on-line diary.

More Links available on the Links page ~

I have enjoyed this time putting the page together and plan to continue working on it, updating it, and adding more information and links. If you have comments or suggestions, I'd like to hear from you.

Keep smiling it's good for you!!!