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rose

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OK, I've got yet another question. My soft palate is weak, and I believe my laryngologist said the left (or right?) side is partially paralyzed. It does cause trouble sometimes when I eat, and I've had intermittent problems when I relax after falling asleep where my soft palate just descends. Its like it falls down like a curtain on a stage. Sometimes it wakes me, sometimes its more like I'm just aware that it has done that. It blocks the air as I exhale. I feel it bumping on the back of my tongue. Very occasionally when I'm tired or very stressed it will move down where it partially blocks airflow when I'm awake and just breathing, the harder I would exhale the lower it would go.

Well today, I was wide awake, not overly stressed or tired that I was aware of. I was laying out sunbathing ~ and it did the shut down thing. One time first breath was just the left side came down, second breath it felt like the entire soft palate moved down onto my tongue. A couple more breaths like that ( feeling it on my tongue when I exhaled) and then it just moved back up again. A little while later, like maybe 20 minutes or so, it did it again although it wasn't one sided then. I was so surprised, I didn't even move, was just trying to analyze what had happened as it usually takes place under different circumstances. It was not any voluntary movement on my part that caused it to block airflow or to move back up again. It seems like if it was a spasm I'd feel tightening, and I don't, it just goes bumping down on my tongue, and it blocks me exhaling but not inhaling. Has anyone else experienced this, and if so, do you know what it means? thanks, :)
 

CindyM

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I have had this for some time. You describe it very well! The roof of my mouth collapses when I sleep or am nearly asleep. It is one reason they put me on a CPAP years ago- the machine forces air down past the soft pallet. CPAP machines are not recommended for neuromuscular disorders, though. You might need a Bi Pap instead. The goal is to get air in past the fallen pallet.
 

olly

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sorry to but in............... i can not sleep/breathe when layed down flat.
i have over the course of 1-2yrs progressed to five pillows and sleep in a semi-upright position. before i started building up my pillows i would occationally wake up choking and unable to breathe. now if one of my pillows slip while i am asleep it wakes me up straight away.
my soft palate does not look as high as it should,the left side droops down a bit more. when you close your mouth is the palate /uvula supposed to come down? is the uvula supposed to touch the tongue?
its a tricky one as you can not ask people if you can look in there mouth to check?
take care
caroline:-D
 

Al

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If you need 5 pillows olly, it's high time you had your breathing checked. I'd bet money you need a Bipap.
AL.
 

rose

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Thanks everyone for your replies. Cindy, I've read before that cpap is not good for the neuromuscular, although I don't know why, but after my sleep study my laryngologist, wanted me to go at least try the cpap, I've opted to wait until after my next visit down to Hopkins though. It has only happened when I was sleeping or almost asleep, like you said, so the other day it is the first time it happened when I was wide awake (but laying on my back, not flat, but in a lounge chair). The second time it did it the other day, I became conscious of the back of my neck pressing harder against the chair immediately before it, so I think maybe those muscles in the neck that are controlled by the bulbar nerves could perhaps play a part in it. It was just so odd having it fall down, and then go back up spontaneously. ... Caroline, yes, how can we know what something looks like in the mouth when its closed! I totally agree with Al that you need to have your breathing checked. I know you've got to be upset about all of this becoming more pronounced, but its like anything else in life, its not as fearsome if we know what we're dealing with. ... take care, :)
 
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