Posted by: Lynn Yarbrough ®
02/02/2003, 16:13:52
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What you have described sounds more like Meige syndrome than BEB, since Meige affects parts of the face south of the eyes, with similar spasmodic behavior. I have no idea what treatment might be effective. I sincerely hope and pray that you find something that will give you some relief, intermittent as that may be. I have observed that my eye spasms cause extreme stress, and the stress feeds back into the spasms, so finding some way to relieve the stress always helps at least a little bit. How that translates into relief for Generalized Dystonia I'm not sure. Good luck! --- Lynn
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Posted by: June in Toronto ®
02/02/2003, 18:46:28
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Hi Steph and welcome to the beb bb. Others on this bb have breathing problems and will no doubt post back to you. The triggers you mentioned, bright lights especially at night (in a car even as a passenger is terrible for me), loud noises and especially cold winds, are all triggers and cause spasms/closure of the eyes. Social occasions can be especially difficult so, as Lynn suggested, stress needs to be handled as much as possible - as it should be with any disease/disorder. Are you having any botox injections for your beb? Make sure you are keeping your eyes very well moisturised with non-preservative drops and creams and a night mask help also. Good luck - come back as often as you want.June in Toronto (beb/meige - 8 years))
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Posted by: Kathy in Oregon ®
02/03/2003, 07:53:45
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Steven, i find that if I can't get my eye spasms under control, my face also starts to act up, which is very disconcerting. i think it's meige or facial dystonia.
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Posted by: Virginia ®
02/03/2003, 09:16:20
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Hi Steph and welcome to this BB. I'm one of those who does experience breathing difficulties and jaw clenching with my BEB. I can't shed much light on the subject, as no one has been able to come up with anything to relieve the combination of symptoms. I get botox in my jaw for the clenching and have tried various meds for the other, but so far nothing helps except for lying down for a while propped up slightly with a pillow under my neck (and sometimes a heating pad). That approach doesn't work very well when you are trying to shop or work in the garden, though. Bright lights and computers don't seem to trigger the breathing problems, but loud noises and physical exertion do.As far as I know, I don't have Generalized Dystonia, just a collection of focal dystonias. Please post on this BB if you find anything that works for you. There are several of us here that are experiments waiting to be conducted. Virginia in AL
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Posted by: Ann Doyle ®
02/03/2003, 12:15:00
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Hi Steph. I'll bet the bright lights you are talking about are flourescent. I had my prescription glasses specially tinted for flouescent lights but I really like my cheap glasses that I bought at a Discount Store. They are brown but they cover the top and the sides. I wear them over my regular glasses. People use them for sking and after cataract surgery.
I have Blepharhospasm with Meige syndrome. I believe the Bleph is the eyes and the mouth, jaw , throat is the Meige. Meige is the name of the man who "discovered " it. You can pronounce that anyway you want. I've noticed that no matter how I pronounce it someone will always correct me with a different pronunciation. I had the same trouble with "Saucony" shoes.
I have trouble swallowing. I wake up in the middle of the night and feel like I can't breath. Actually, I can't swallow. I sit up and turn to the left and try and relax and then I'm OK. My worst side is my right for the Bleph. It was just instinctive to turn to the left and sit up.
The worst place to be is an Arcade. It used to be my favorite spot to take my grandkids but between the noise and the flashing lights--well , just give it a try and you'll see what I mean.
I go to a Movement Disorder Specialist every 10 weeks for Botox shots around the eyes and for the jaw and throat. He doesn't like to give them around the mouths because of side effects but the choice is mine. We work together. He listens to me and writes things down--how much Botox he put and where he put it He is over 100 miles away but worth the drive. It usually takes 2 or 3 doctors before you find the right one for you. You can eliminate some by asking the recptionist on the phone before you even make an appointment--How many bleph patients does he gives Botox? Some give a lot of cosmetic Botox. Don't waste your time. Also, you want one who uses a 30-32 needle and changes it frequently. The number means it is a small gauge so it shouldn't hurt. Also, each time they put the syringe in the bottle they should change needles, they pull off the slippery sheathing on the way out of the bottle. It's just good hygiene anyway. Ann Doyle
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Posted by: steph craner ®
02/03/2003, 14:09:03
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Thanks everyone for your responses. It's interesting you mention Meige, although I do also get spasms over my scalp! I think when you have Generalised Dystonia they give up calling all the areas by their focal names-I hope so anyway, otherwise it would be rather a mouthful!Yes, Anne, the lights are flurescent! Steph
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Posted by: Jeannie Day ®
02/06/2003, 21:47:39
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Hi Steph, remember me? The special education teacher as you are.You mentioned you thought the eye spasms triggered the breathing spasms. I have a theory that it's the other way around. When I take Benadryl, my breathing is normal and the eye spasms cease for the duration of the Benadryl effect. I have also been biting down on the inside of my bottom lip recently. As a matter of fact it started right after I had dental work-- a crown- on that same side. Not sure if there is a connection, but it sure sounds as though it could be. Jeannie from Ohio where it is snowing and cold.
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Posted by: Brenda in Louisiana ®
04/17/2003, 09:32:24
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Hi Steph,
I have Dystonia and Blepharospasm and just had my second shots of Botox. For about 4 weeks I have lazy eyes until the honeymoon period where I get the best results. But the biggest problem I have is breathing problems. My doctors look at me like I am from Mars. I have had to download all info I can get to give to them to educate them on these diseases. I wheeze and gulp for air. I can FEEL my nasal passages and throat SPASM, making it hard to get air through them. These things are complicated by asthma in my case, and I have to do breathing treatmens twice a day for that. Alos I have "terrible" sinuses, revealed by MRI, that I have to nasal irrigation twice a day and we are trying a new inhaler. My spasms are a little better after being on these new pulmonary procedures for a week...but I just had botox a week ago also. So I don't know which is helping. At least I get a few hours of easy breathing a day now and then. But stress really sends it over the wall. If I am totally concentrating on somthing the spasms are not too bad and sometimes totally gone...but just sitting or lying around turns them on like a light switch. Good luck and please let me know if you have found any solutions for the brathing spasms.Thanks,
Brenda
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Posted by: Virginia ®
04/17/2003, 11:02:05
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I don't have generalized dystonia, but I do have the same link with the eye spasms, breathing difficulties and jaw clamping - usually accompanied by tightness in my neck. Noises are a trigger for me (not the only one - physical effort seems to be one), although computer screens, artificial light and driving at night don't seem to set anything off. Other than resting, I haven't found anything that really helps. If you come across anything that helps, I'd love to hear about it.Virginia in Alabama, with empathy, but not much help.
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