Posted by Jeff on May 21, 1998 at 09:55:33:

In Reply to: Being treated but remain tired--please advise posted by John on May 19, 1998 at 19:04:03:

Hi John,

I'm afraid I don't have alot of answers for you as I'm getting mixed results on CPAP over the last 2 years but I have won a few of the smaller battles.

My mask also used to leak when I'd roll over and change positions. The hose would get pinched between the pillow and the headboard or a number of other places so when I moved it tugged on the mask creating a leak. I mounted a pivoting bracket on the wall over the bed and and attached the hose to it. I left a little slack in the hose between the mount and the mask. Now the swivel on the mask works perfectly. Also, I found that when I'd roll over the pillow I was using would push against the side of the mask and cause a leak. I was using an overstuffed goose down pillow. I switched to a "Breathe Rite" pillow or something like that (it's a very thin pillow with a roll to support the neck). Not only did that solve the leak but the better neck, head and back alignment seemed to allow the CPAP to work a little better.

Nasal pillows for me were, at first, a great improvement - more comfortable and what seemed like a greater flow of air. The problems I experienced were that the headgear doesn't stabilize as well which allowed for movement and created sores on the inside of my nose. At first the pillows offered an outstanding seal. Now the seal is not good at all. They insert further and further into my nose. The only explanation I have is that they appear to have, over time, stretched out my nostrils. Now the largest size available affords me a poor seal.

I'm still looking for answers as are many of us here. Don't dispair that you did not get dramatic results right from the start. They're not all they're cracked up to be anyway. My first 2 weeks on CPAP were amazing. I was fully alert for the first time in perhaps years. I was everywhere doing everything. Then I started getting mixed results - 1 or 2 good nights mixed in with 5 or 6 not so good ones. After 2 years on CPAP, a good night's sleep is getting increasingly rare.

I wish you the very best and if you find a few things that help you, please post them here.

Jeff

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