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i was just diagnosed with sleep apnea too. I did a sleep study last Fri

night.I stopped breathing between 30-40 times in an hour and I snore REALLY

bad.I

come from a family of snorers, so I really wasn't too concerned; but I am

now.

Barb

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This does seem to be a problem among some CMTers. I have gone through

the sleep study and now sleep with a CPAP because of problems

breathing while lying down. Go to the " File " section and read the

article under " Breathing and CMT. " It tells how CMT can weaken the

diaphragm and cause problems breathing at night. I had most of the

symptoms associated with the weak diaphragm mentioned in the article

and none of my doctors tried to help me. When a technician giving me

a chemically induced stress test learned that I could not breathe

lying on my back, he suggested I see a pulmonologist. I did and that

made all the difference.

I took took a copy of the article from the CMT files to my neurologist

last month and asked for a copy to be kept in my file. (He always

told me CMT affected only the hands and lower extremities, never the

internal organs. I'm considering finding a different neurologist.) --

Joe

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I was diagnosed with sleep apnea three years ago. I started using a

CPAP which helped some. But after considering all factors, I have

decided to have the UPPP surgery. This surgery might not be the best

option for some people, but I have a very large uvula which is a big

factor in my apnea & snoring. I can feel it flapping sometimes when I

am awake.

A big deal for me is that I lost weight and the sleep apnea didn't

seem to improve.

Let me know if you have any questions. I will post my post-surgery

results in a month or so.

Rob

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Hi Rob,

I was also diagnosed with sleep apnea about three years ago. My apnea was at

first rated as mild to severe (through sleep studies) depending on my sleep

position (worse when sleeping on my back). Over the past year it has become

more severe and I have difficulty sleeping through the night. I am awakened

several times gasping for breath and I feel as if I am choking. In the morning

I suffer from severe headaches ( feels like a hangover without the party).

After another night at the sleep clinic the result were much worse and I stop

breathing more often. I have tried a to use the CPAP machine but had difficulty

finding a mask that would fit and was comfortable. The only way I can sleep at

all with the machine, is to take sleeping pills, which I do not want to do long

term. I have just about given up on the machine. I have devised a kind of vest

that has golf balls sewn in the back to stop me from rolling on my back when I

sleep, it seems to help some. I know I should use the machine but I am so sleep

deprived when I try that I don't think it will work. How long did it take you

to adjust to sleeping with the CPAP?

Warm Regards,

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,

I never really got totally used to the CPAP. Sometimes it works fine,

but that's only 20% of the time. Allergies or a stuffy nose make it

near impossible to use it sometimes. The rest of the time I either

forget or I use it and unknowingly take it off while asleep.

Rob

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,

Have you tried a nasal pillow instead of the mask? I didn't like the mask at

all--it made me feel claustrophobic. The nasal pillow lies under your nose with

2 short canulas feeding the air directly into the nostrils.

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You need to try something, and even though your vest idea was a good one, you

need to work on the other solutions as well. The reason I mention this is that

a sister of a really good friend of mother died in her sleep from Sleep Apnea.

I was diagnosed around three years ago myself. It took me a while

to get use to my mask, and I still am not a fan, but you need to

try. My sleep center and the hospital offer Sleep Meetings where

suppliers bring in equipment to show. I would suggest visiting one

of these, or a medical supplier and see if you can find a mask that

works better for you. I cannot stand anything in my nose so I use

the mask. But there are many styles, a lot of styles, so check them

out and find one that works for you.

RPM

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