Re: Respiratory problems at night

[Guest guest]

Joe, it is my understanding that CMT does not affect the heart, lungs

and brain but I don't know if there is an association with CMT. I have

been wearing a CPAP mask for over 5 years, I am overweight and my

mother had sleep apnea but was not treated.

I am a nurse and I would suggest seeing your dr about this. If you

still have daytime fatigue you should be re-evaluated. You may need to

have the pressure support increased or possibly add oxygen. Your dr

can run tests for this. What about talking with the respiratory

company that set you up. They may have a way of evaluating your

situation and making suggestions to your dr.

Amy

[Guest guest]

I also having breathing problems at night. I wear oxygen at night. I only need

it on 1 Liter. I sleep with lots of pillows. Pretty upright. That makes the

difference though. My pulmonologist wants me to try CPAP but I am claustophobic.

So I don't think I could tolerate it. Hope that helps.

Bobbie

[Guest guest]

Thanks Amy. I will contact my therapist today.

[Guest guest]

I had that problem but I had a uvalapalotoplasty done and I have had no more

problems. Maybe you should ask your ear nose and throat doctor about this

solution. If you need more explanation about what this procedure is email me

personally and I will explain it.

Cathleen in Arkansas

[Guest guest]

Bobbie,

I empathize with your claustrophobia as I have a mild-moderate case of it

(depending on the situation). I just thougt I would pass on to you that there

are many styles of CPAP masks. Full face masks (mouth and nose) would probably

not be a good idea for you. Nasal masks (which is what I use) is not too bad.

They even make ones that are essentially nasal prongs which a litle bulkier than

what you use for oxygen. I am just saying there are plenty of options. Do a

search for CPAP masks and you can see for yourself the variety. Good luck.

Amy

[Guest guest]

Thanks Amy, For the info on the CPAP. I will do some internet searching. I have

not seen any of the others except for the nose/mouth mask.

Bobbie

[Guest guest]

Hi Bobbie,

I have been going through the same problem for about 5 years now. I have had 2

separate overnight sleep studies in the past 2 years. The apnea was originally

moderate but I am now considered severe, as I stop breathing numerous times per

hour as I sleep. I have tried several different masks (including the nasal

tubes) and I have not been able to sleep with any of them, even with sleeping

pills (which I hate to take). The main problem I have is trying to find a mask

that fits as I have a very small mouth and nose. (Although my friends would

question the mouth part?) I am totally frustrated and don't know what to do

next. I sleep very poorly and when I awake in the morning I feel like someone

hit me over the head with a baseball bat and I am totally exhausted! (Wouldn't

mind but I don't even play baseball...chuckle....!)

I am usually a very positive person but when you lack sleep it is pretty hard to

cope. The frustrating part is that the doctor does not realize there is a

connection between sleep apnea and CMT. (Like many doctors he thinks CMT only

affects the hands and feet).

Regardless of the problem getting a mask that fits I find the machine very hard

to tolerate. Sorry to ramble but if you find a good site for masks could you

please pass it on to me. I am located in Canada.

Warmest Regards,