Thanks for the welcome


Posted by Judith Donel , Jan 29,2002,23:03   Archive
I have been reading the bb for several weeks now and can't believe how much it helps to hear you guys talk about the same things that are going on with me. Sometimes I actually believe it is all in my mind. (I know better). I am 61 years old and I was diagnosed with beb about 6 years ago and get 60 units every three months. I was getting more, but we are trying to cut back on the doseage to see if it helps the dry eye problem.

I was wondering if any of you have any breathing problems? I have been having these problems for about a year and never connected it with beb until I read it in the bebrf newsletter. Any input on this would be helpful.

Thanks to all of you, Judy in Ohio




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Breathing problems

Re : Thanks for the welcome --- Judith Donel
Posted by Virginia , Jan 30,2002,08:29 Top of Thread Archive
Yes, some of us do. So far I haven't found anything that helps. I have seen 2 movement disorder specialists - one who didn't offer any suggestions and one who is going to go through a trial period with several meds to see if any of them work. So far I've only tried baclofen and it was no help. I'm already taking clonazepam and it doesn't do anything for the breathing problems either. Let us all know if you find anything that works for you.

I also have a problem with dry eyes. My lower ducts are cauterized, but not the upper. The thing that works best for me is to use the gooiest stuff I can find at night and cover my eyes while I sleep. After my myectomy one eye doesn't close completely and it dries out overnight. This can happen with botox, too. If I keep them gooed and covered overnight, they feel pretty good most of the day with drops or gel just occasionally.

Virginia in Alabama, where it's starting to look like spring outside - way too early.




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Breathing problems

Re : Thanks for the welcome --- Judith Donel
Posted by Joann Humphrey , Jan 30,2002,12:16 Top of Thread Archive
I had a breathing problem once & I know it was stress & Blepharospasm related. Someone called it an anxiety attack. I've quit doing the things that I know cause more stress (playing bridge & some of the computer games). Good luck & keep reading the BB. This is my support group.
Joann in Ark.



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Re: Thanks for the welcome

Re : Thanks for the welcome --- Judith Donel
Posted by Joanne Matuzas , Jan 30,2002,15:13 Top of Thread Archive
I also am having dystonia affect my breathing for about 2 years now.
I find it extremely frustrating and most folks assume it is just asthma.
Fortunately for me, Benedryl(25mg)(the antihistamine which also has anti-cholergic properties) helps me most of the time. I also take it with an anti-anxiety related to klonopin called Serax (10mg) (both are benzodiazapines) and it seems to help some. I alternate the benedryl and serax usually taking 2 pills each a day. My last botox injections
were not as effective and I am having more difficulty with the breathing and meige as a result. And be aware that a med that works for one of us will not work for another. We network here and figure it's worth a try. Hope this helps. You are NOT alone with this!! Joanne M. San Diego, CA



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Re: Breathing Problems

Re : Thanks for the welcome --- Judith Donel
Posted by Tim Johnson-PA-USA , Jan 30,2002,21:14 Top of Thread Archive
Welcome to the BB. Glad you are getting help by reading. I know I have sure benefitted greatly from this place, and learned so much that was going on with me is associated with BEB, and I did not realize it, even after being diagnosed with BEB for nine years.

One of those things is breathing problems at times, usually when I'm really tired or stressed or been around people, or taken a walk...when I am at my worst, the problems with the eyes, face, throat extend to the breathing, and diaphragm spasms. I even make a "snorting" sound, as I seem to be trying to exhale constantly through my nose. It exhausts me in no time. I haven't found anything that helps, except getting alone and quiet and taking extra klonopin. This is really troubling, and also quite embarrassing when in public or around others.

Tim in PA hoping you post again.




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Re: Breathing Problems

Re : Re: Breathing Problems --- Tim Johnson-PA-USA
Posted by catherine pender , Jan 31,2002,04:47 Top of Thread Archive
I have posted this several time but there are alway new people around who might light to try this for a breathing problem. Has anyone tried this yet?????

Take childrens dosage of a motion sickness tablet. The chewable ones.
You can by it over the counter and carry it with you when you feel the need. Large crowds and stressful situations still cause me to have trouble with my breathing, I feel like I am holding my breath and then heave a big sign. These are not habit forming and can be taken between other prescription meds. It also come in adult strength but I find I get very sleepy with it. But just like Benedrely your body will adapt over time.

Catherine In Calgary where it is 3: something and can't sleep




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Re: Breathing Problems

Re : Re: Breathing Problems --- Tim Johnson-PA-USA
Posted by John Terry , Feb 03,2002,14:34 Top of Thread Archive
Tim: This is Jack's wife replying because he's having a lousy day today. His breathing (and snorting) problems seem to be identical to your problem. He was diagnosed with BEB last May and as you know, it's been difficult to get relief. The latest neurologist he's seen recommended something called Haloperidol (spelling may be wrong) and his Botox is wearing off. Jack is 59 and we live in NY State. He had to retire in August, can't drive, tries very hard to have peaceful days meditating, doing yoga and taking walks, but life as he knew it is a thing of the past. We all feel so helpless - any hints? Also, isn't is sad that most doctors (including some eye doctors) are totally unfamiliar with the destructiveness of this condition and it's hard to get benefits. The Meige Syndrome seems to close the eyes and bring on the eye spasms all over again. It's a cause and effect msrry go round. If you're on, we'd love to hear from you. Otherwise, e-mail when you can.



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Re: Breathing Problems

Re : Thanks for the welcome --- Judith Donel
Posted by Dee in OR , Feb 03,2002,19:05 Top of Thread Archive
Hi Judy,

I have allot of trouble with my breathing. It helps if I lay on the floor on my back with my knees bent and feet flat on the floor. I do this for a few minutes and it seems to loosen the muscles. I have tried all the meds and none of them worked. I posted a link to an article about this very subject. Take care.

Dee in OR

Related link: http://www.dystonia-support.org/la-involvement%20of%20respiratory%20muscles%20in%20adult-onset%20dystonia.htm

--modified by Dee in OR at Sun, Feb 03, 2002, 19:08:05




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