brite23
04-09-2007, 10:03 PM
I see that there are a lot of people 'lurking' but no one posting... sooooo, I think I will take the initiative and start posting. It would be wonderful to see those new to this lovely affliction find support with eachother on here!
I want to offer a survival guide for those new to bells:
1. Take care of your eye. Seriously. Use eye drops several times throughout the day and do not allow your eye to dry out. If need be, use an eye patch or see your eye dr about getting a contact lens bandage if you are unable to close your eye, especially to sleep in the early days. Care of your eye will help to prevent corneal scarring if your bells goes on for a longer period of time. If you have a problem with your eye that is driving you nuts such as chronic dry eye or a very watery eye, ask your eye dr to insert a 'punctal plug' into your tear duct for you. I suffered for almost 6 years with a watering eye till I found out about the plug and once it was put in, my eye felt better within 5 minutes! I wish I had done it right away and saved myself all that misery. They do not hurt (they are tiny, tiny) and are easily inserted in the office. It's one of the best things I every did for my bells.
2. Research your options regarding the drugs used to 'treat' bells. There are conflicting thoughts on steriods and anti-virus's. Some dr's believe they are only a placebo while others believe that they prevent further nerve damage. I've seen people who've used them and not had good recoveries and have seen others who did not use them and had great recoveries. In the end, it is all about nerve damage and how each individual is affected. The amount of nerve damage done in the very early stages (sometimes within hours) determines the outcome overall.
3. NO STRESS! This is vital. The herpes virus (cold sore type) that is thought to cause approx 75% of all bells cases is a nasty little guy who thrives on stress. Not only that, but your brain needs to do a big job in regenerating the damaged nerves (we heal from the brain down) and stress inhibits healing. Rest, relaxation and freedom from stress is very important and it is your job during this healing phase to keep yourself calm and relaxed.
4. Brain fog is a fact of life with bells. The rest will help as will time. I had a dr tell me that for a bells patient to have organized thought is about the same as putting someone on a merry-go-round and asking them to do math. It does get better. Believe me.
5. Nutrition is important. Methylcobalamin B12 is a neuro vitamin that enhances healing of the nerves, 25 to 40 mgs per day under the tongue is the best dose. Calcium and magnesium are great for nerve health and muscle health. B-complex is important for stress and healing. Acupuncture is fabulous for bells and massage is also great. E-stim probably does nothing and I would save your money and use it for something else, such as acupuncture or massage.
6. DO NOT FORCE MOVEMENTS!!! I cannot stress this enough. Rest your face! By forcing movements you are setting yourself up for a physiological effect of nerve healing called 'synkinesis'. This is where the brain sends the nerve impulses that are healing first to the wrong places. For example, the nerves that should normally go to the eye will be wrongly re-wired to the mouth so that every time you smile, your eye will involuntarily close up. Or, your eye brow could raise up when you pucker your lips, or your neck muscle (platysma) will pop out when you smile... the combinations are numerous. With a long term case of bells, there will almost always be a certain amount of synkinesis due to the fact that we use our faces so much for normal functioning, but by forcing movements we make it worse. For more information on synkinesis, go to www.bellspalsy.ws and have a look.
7. The only treatment for long term bells, synkinesis, tightness etc that lingers beyond a year is a treatment called 'neuromuscular retraining' or NMR. This is done under the supervision of a physio therapist (or other therapist) trained to teach you this type of treatment. Simply put, it retrains the brain to use the re-wired nerve impulses in their new homes as it did before the synkinesis/bells. It is a wonderful treatment and it works very well as long as the patient is willing to do the work. When I started NMR at one year post onset, I had approx 56% function overall. After a few years of the treatment (it takes a mere 10 mins per day), I was up to between 90 and 100%. I would never have achieved this on my own. Spontaneous healing will not do what NMR will do. To find a therapist in your area, go to www.bellspalsy.ws and look at their practioner list. There are therapists world wide who can help you. Even if you have to travel to see one and learn NMR quickly, it is well worth it.
8. Be patient and know that most of us heal very well. A more severe case may be left with some residuals such as tightness or a lopsided grin, but you will be more aware of it than others will. Make bells what you have and not who you are. You WILL be ok.
I want to offer a survival guide for those new to bells:
1. Take care of your eye. Seriously. Use eye drops several times throughout the day and do not allow your eye to dry out. If need be, use an eye patch or see your eye dr about getting a contact lens bandage if you are unable to close your eye, especially to sleep in the early days. Care of your eye will help to prevent corneal scarring if your bells goes on for a longer period of time. If you have a problem with your eye that is driving you nuts such as chronic dry eye or a very watery eye, ask your eye dr to insert a 'punctal plug' into your tear duct for you. I suffered for almost 6 years with a watering eye till I found out about the plug and once it was put in, my eye felt better within 5 minutes! I wish I had done it right away and saved myself all that misery. They do not hurt (they are tiny, tiny) and are easily inserted in the office. It's one of the best things I every did for my bells.
2. Research your options regarding the drugs used to 'treat' bells. There are conflicting thoughts on steriods and anti-virus's. Some dr's believe they are only a placebo while others believe that they prevent further nerve damage. I've seen people who've used them and not had good recoveries and have seen others who did not use them and had great recoveries. In the end, it is all about nerve damage and how each individual is affected. The amount of nerve damage done in the very early stages (sometimes within hours) determines the outcome overall.
3. NO STRESS! This is vital. The herpes virus (cold sore type) that is thought to cause approx 75% of all bells cases is a nasty little guy who thrives on stress. Not only that, but your brain needs to do a big job in regenerating the damaged nerves (we heal from the brain down) and stress inhibits healing. Rest, relaxation and freedom from stress is very important and it is your job during this healing phase to keep yourself calm and relaxed.
4. Brain fog is a fact of life with bells. The rest will help as will time. I had a dr tell me that for a bells patient to have organized thought is about the same as putting someone on a merry-go-round and asking them to do math. It does get better. Believe me.
5. Nutrition is important. Methylcobalamin B12 is a neuro vitamin that enhances healing of the nerves, 25 to 40 mgs per day under the tongue is the best dose. Calcium and magnesium are great for nerve health and muscle health. B-complex is important for stress and healing. Acupuncture is fabulous for bells and massage is also great. E-stim probably does nothing and I would save your money and use it for something else, such as acupuncture or massage.
6. DO NOT FORCE MOVEMENTS!!! I cannot stress this enough. Rest your face! By forcing movements you are setting yourself up for a physiological effect of nerve healing called 'synkinesis'. This is where the brain sends the nerve impulses that are healing first to the wrong places. For example, the nerves that should normally go to the eye will be wrongly re-wired to the mouth so that every time you smile, your eye will involuntarily close up. Or, your eye brow could raise up when you pucker your lips, or your neck muscle (platysma) will pop out when you smile... the combinations are numerous. With a long term case of bells, there will almost always be a certain amount of synkinesis due to the fact that we use our faces so much for normal functioning, but by forcing movements we make it worse. For more information on synkinesis, go to www.bellspalsy.ws and have a look.
7. The only treatment for long term bells, synkinesis, tightness etc that lingers beyond a year is a treatment called 'neuromuscular retraining' or NMR. This is done under the supervision of a physio therapist (or other therapist) trained to teach you this type of treatment. Simply put, it retrains the brain to use the re-wired nerve impulses in their new homes as it did before the synkinesis/bells. It is a wonderful treatment and it works very well as long as the patient is willing to do the work. When I started NMR at one year post onset, I had approx 56% function overall. After a few years of the treatment (it takes a mere 10 mins per day), I was up to between 90 and 100%. I would never have achieved this on my own. Spontaneous healing will not do what NMR will do. To find a therapist in your area, go to www.bellspalsy.ws and look at their practioner list. There are therapists world wide who can help you. Even if you have to travel to see one and learn NMR quickly, it is well worth it.
8. Be patient and know that most of us heal very well. A more severe case may be left with some residuals such as tightness or a lopsided grin, but you will be more aware of it than others will. Make bells what you have and not who you are. You WILL be ok.