Weak BULBAR function cmt

[CMTSECRETS]

Anyone has or know of CMT sufferers about their BULBAR function weakened presenting symptoms of Loss os speech , mouth eating swallowing function respiratory, a lot of saliva build up that drools unnoticeable ?

[chuckles333]

Strange your post on speech i had a mini stroke October 2015, i did not know i noticed my speech was slured & right arm slightly numb i phoned 111 medic done a ECG i was told mini stroke, I noticed lately now & then my speech is funny, i was wondering if i was having mini strokes. I will have to ask my Doctor on this matter. Is it CMT the cause or Mini strokes?

[spabbygirl]

Hi, I have swallowing and speech difficulties and I can choke on nothing. I was referred to my neurologist and once he'd ruled out other causes he said that it probably was CMT and they can't do anything about it. I don't have that lopsidedness you get with strokes and my lips are ok so I don't dribble, yet anyway.

[Amanita in reply to spabbygirl]

Interested in your ability to "choke on nothing", Spabbygirl.

I occasionally have terrifying episodes of laryngospasm - when your vocal cords snap shut and won't let you breathe in. It seems to be provoked by inhaling a minuscule particle of something - possibly saliva, and your body thinks you are drowning and shuts down your throat. The more you try to breathe in through your mouth the worse it becomes, but you need to remember to try to take tiny shallow breaths which is counterintuitive. Breathing gradually resumes, very noisily (stridor), and after what seems like ages but is actually more like a minute and a half you are breathing fairly well again. I now know to breathe very gently through my nose if suspect this is going to happen, and so far I have not had an episode for a year..

[spabbygirl]

that is probably what I have Amanita, usually in bed and it probably is a bit of saliva that triggers the episode. Then I struggle to breathe as you say. It is horrible, so frightening cos it does seem to go on for ages. I will try nose breathing next time, anything to avoid another episode. Thanks for that.

[Amanita in reply to spabbygirl]

Hi, Spabbygirl,

My first episode of laryngospasm was when coming round from a gen. anaesthetic. The nurse just told me to breathe very gently : the last thing you think of when panicking and unable to drag air in. The only subsequent time that it happened with other people around, it frightened them too. We had just finished a picnic lunch and one of them assumed I was choking and tried the Heimlich manoeuvre - well-meaning and at least did no harm. Apparently my lips had turned blue.

I have since seen NHS specialists about it - and the second one recommended very gentle nose-breathing. They also said reassuringly that if you actually lose consciousness, your throat relaxes naturally and breathing recommences. I hope neither of us has to find out!

The best online information about laryngospasm I have found is a short Youtube video by Robert Bastian.

My other reason for being referred to voice clinics is my diplophonia ( production of two notes simultaneously - in my case when trying to sing, which meant leaving the choral society I loved). It was initially attributed to "silent reflux" (the nearly fat-free diet and speech/voice therapy didn't help one jot), and a second opinion thought it was due to "stress" ( I wasn't convinced as the double-notes had started after a very stressful period and still persists years later) - and "maybe some input from CMT".... They couldn't see anything the matter with my v. cords but I still get horribly unpredictable sounds even when relaxed and happy and just occasionally trying to sing in the shower.

I do hope you'll find the nose-breathing technique works for you. Now I get a bit of a feeling for when it is just about to happen and take action before it actually does. Difficult if it happens when you are asleep though.