Re: BEB/Breathing
isn't that the spasmodic dystonia that some of those on this board have. right now we have so much ragweed (allergan) in the air here along with very windy that i think mine is pretty much allergies.
Re: BEB/Breathing
Joann,I have trouble breathing almost all of the time and I get out of breath real fast. It is from the dystonia I'm told. My muscles get tight and then my lungs can't expand. It feels awful. Sometimes it helps if I lay flat on the floor on my back with my knees bent and feet on the floor. Other times I just gasp! Dee in OR
Re: BEB/Breathing
I get out of breath when I exert myself, even on light activities (like housework, yuck!), much of the time. Other times, I feel like I can't get air in. Sometimes it affects my speaking, but not my voice (if that makes any sense). I don't seem to have enough air to get out more than partial sentences, but my voice sounds normal when I do. It isn't usually that bad, though. Mostly it's just the "can't get air in" thing.
Re: BEB/Breathing
Well, Joann, you just hit my target button!!! I have been on a quest about this very problem--mine is much as Virginia describes--together with meige (especially grimacing). I have been to an ENT surgeon and do not have spasmodic dysphonia--I do know that there are definite changes in the voice when one has dysphonia. In my case, the breathing is irregular and at times seems as if I am almost gasping for air. I have had people in public ask if I am ok. Sometimes my words or sentences can be broken but the voice is ok. I also have some trouble with exercising--yoga or stretching seems to be best for me. Also the breathing difficulties can originate in the muscles in the neck and around the throat or your diaphragm can actually be what is spasming.
My new neurologist will do some more injecting next time across the outer neck muscles in the hopes of relaxing the grimacing and in turn
maybe the breathing difficulties. Another long shot but we try them all. The doctors seem to think this aspect is relatively uncommon but when I chatted with Virginia, there seem to be more and more of us with this difficulty. Hope this helps a bit.
Joanne M. San Diego, CA
Re: BEB/Breathing
I kept telling my movement disorder specialist that I was having trouble breathing and she kept trying to convince me I had asthma! Then I ran across an article about breathing problems in adults with dystonia and I sent her a copy. She said she had no idea I was having trouble breathing and I said that's because you never listened to what I was telling you. Needless to say, she ain't my doctor anymore. If I can find the article, I will send it to whoever sends me their address first!Dee in OR
--modified by Dee in OR at Wed, Oct 10, 2001, 23:35:07
article
Dee Please send me your e-mail address & I'll send my address to you that way. I'd love to see it. Thanks. Joann
Re: article
Joann, just click on Dee's name in her post (blue and underlined) to email her.
Re: BEB/Breathing
Dee, I haven't been able to get your e-mail address so I'd just like to thank you for all the hugs and comforting words. ((((H)))) Big hug. Ann D.
Re: BEB/Breathing
Ann, you are more than welcome!! Glad to have you on Board!!Dee in OR wdjl@canby.com
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