Re: Breathing problems
Thanks for your comments about my article. I respect the doctors who do the Q&A, but I also know that they don't have all the answers. There are just too many people who have breathing problems who have BEB/Meige for me to be satisfied with a simple "No" answer. The patients who suffer from breathing problems are the final answer for me...as in most cases I have found that the patients are the experts when it comes to many things about BEB/Meige. The breathing muscles are the diaphragm, rib costals, shoulders, neck muscles, and even face muscles. (Also the brain stem controls breathing and this is a brain disorder.) Just having watched patients with respiratory problems or distress has taught me that as a nurse. There is more that doctors "don't know" about BEB/Meige than what they really "do know for sure". That's my opinion as a patient who has talked to dozens of "doctor experts" and hundreds of "expert patients". Also I worked with doctors for most of my life and they are just people like you and I....they can't and don't know everything, especially if they haven't experienced it first hand. Sure anxiety can cause changes in breathing and sunlight can make anyone blink....but when it can not be controlled and is involuntary...that is a symptom of a medical cause. There just hasn't been enough research to say flat out "No". I'll shut up now.
Re: Breathing problems
Oh Delaine I am glad you did not shut up sooner...I had my botox injections for my eye muscles last week and are getting a bit of relief.
I also have some Meige in the lower face with some grimacing but actually my most disturbing symptom is the breathing irregularity.
I have seen the ENT surgeon who has ruled out spasmodic dysphonia and also had a upper GI in throat area to check for obstructions or some
other abnormality. Nothing found. I have a little spasming across
the front of my neck--so the ENT dr and neurologist believe that my
diaphragm is in spasm. Does anyone know if there are more tests to actually determine where the spasming is originating that is causing
the irregular breathing? I tried elavil (Judi from NC had good luck with it) but it seemed to intensify my spasming. I have been on 10-20mg a day of Serax for the last year(anti-anxiety related to benzodiazepines)but since it is
addicting, he wants me off it. So far it is the only drug that helps
me without all the horrific side effects. He has now prescribed
zanaflex(for the breathing) which is a muscle relaxant that inhibits spasmodity--it seems to knock me out and not do a whole lot of anything.
I can't take it at work. He doesn't want to give me Klonopin which I thought maybe should be my next try--then I read Joanne J's post, but we are all different. The other possible try is Neurontin..I am very drug sensitive which doesn't help.
Thanks for anyone's input in this regard as I am rather discouraged
about this. Thanks for listening....Joanne M. San Diego,CA
Re: Breathing problems
I had breathing problems and throat spasms affecting my speech along with the blepharospasms. Benadryl has kept my blepharospasms under control (now I drive and work three days a week) and with the addition of Ativan the the throat and respiratory spasms are under control. I feel most blessed that I can function almost normally (as long as I remember to take my meds) I used Botox before for control every 2 - 3 months before we found the combination of oral meds. It appears that what works for one does not always work for someone else, but it appears that we must keep trying.
Good Luck - Irish Luck!!!!
Marlene
Re: Breathing problems
Marlene, thanks for the response...Joanne M. San Diego, CA
Re: Breathing problems
We have several things in common. I agree with your thoughts about breathing problems and also doctors. I am, also, a nurse. I read your article in the newsletter and added my "Amen". I know that my breathing problems were very real, not caused by anxiety.
Keep writing.
Marlene
Re: Breathing problems
I have (or had may be a better term) severe shortness of breath during the early onset of this disease. I started taking Benadryl when I saw someone post about it on this board. To make a very long history short. I am being treated effectively with Klonopin and Botox for BEB, somewhat effectively with Botox for spasmodic torticollis (neck), and have just had my first Botox for Spasmodic Dysphonia 3 weeks ago. I am off almost all of the medication I was taking for the breathing and am doing quite well. Cross my fingers. I am going through speech therapy now to get rid of the bad breathing habits I've acquired over the past couple years. When I saw the ENT SD specialist at Univ of Chapel Hill he suspected that I had SD, but the real diagnosis was made by the speech therapist tests of voice patterns, etc. The ENT specialist did say that if the breathing was a problem with the vocal cords then the Botox would probably help it; but if it was involvement of the diaphragm then it would not.
Re: Breathing problems
I kept telling my Twitch doctor I was having trouble breathing and she kept telling me to get checked for asthma! Finally I found an article about the relatioship of breathing problems in adults with dystonia (which I also have). I sent it to her with a rather nasty note and she said she never heard me complain of breathing problems and had no record of it. I said that's because you weren't listening to me! Anyway, I know there is a connection with trouble breathing and the blephs. Like Delaine pointed out about all the muscles involved. So the muscles around my diaphragm and lungs were so tight that nothing could expand and I wasn't getting enough air. That's where the chiropractor really helped me. She worked on those muscles every week and kept them looser than they would have been if I hadn't gone to her. Now if I have a problem, I lay down flat on the floor on my back and just genly roll from one side to the other and it helps to open up and loosen those muscles. So that's my story and I'm stickin' to it!Dee in OR where everything is blooming and looks so beautiful.
Re: Breathing problems
Doctors, doctors, doctors - when will they learn that we know better than they do!!! LOL So glad you got that doc sorted out - nerve of her! I didn't realise the connection between beb and breathing - glad your chiro can help you and you have an exercise that you can do yourself. June in Toronto - where `everything is not blooming' - except for the Canada Blooms Show - and that is indoors.
Re: Breathing problems
isn't this definitely a part of meige syndrome? i definitely get throat spasms after my injections. it sometimes feels as if the excess is running down my nasal passages.
Re: Breathing problems
Kathy, this can be part of meige, but not all doctors agree. I have
blepharospasm, some meige in lower face and throat but he claims my
breathing difficulties are from spasming of diaphragm and this is just
another dystonia--I guess it's just terminology but the bottom line is
we got what we got and somehow have to figure out how to deal with it
to live as normal a life as possible. It can be frustrating as well,
because we can take a drug for awhile and then we wake up one day and
the same drug is no longer working....This disorder is quite a challenge
and a passive person will quickly become an assertive one for survival!!
I am making an appt. with another neurologist to get a second opinion
regarding the placement of my botox injections for my eyes and my other
difficulties. Joanne M. San Diego, CA
Re: Breathing problems
i am utterly exhausted with some of the things i've had to do for survival. i did have one additional shot around my worst eye, as Shirley suggested and so far my eyes are working together much better than usual after my injections.
Re: Breathing problems
Kathy,
Glad to hear that you talked to your doc about it and he tried it. That is half the battle, when you can get them to work with you and can discuss and be a participant in your own care.
I'm glad that it is helping. We have to let the doctors know that we have an understanding of our own disorder and that there is not a set medical path to take. We are all different and flexibility is a must.Shirley in AR.
Re: Breathing problems
well i'm glad you figured out what to do about the worst eye and i hope it doesn't act up on me. so far so good. thanks.
Re: Breathing problems
I've got, what I thought was, more sinus problems after my injections of botox last week. Maybe it isn't sinus after all.June in Toronto
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