Obstructive Sleep Apnea -- Sources for Support

[soycoffee]

Like old a new members on this forum, I too have OSA. I use a CPAP machine every night, and have used it for 3 years. Recently, with the emergence of more active Sjögren's, I've had more problems with the CPAP machine and the mask.

Like Artsyamerican, I have been pulling the mask off my face in the middle of the night. For her, it's because her mouth and throat are very very dry; for me, since I do have a humidifier attached to the CPAP machine, dryness is not a problem. BUT my nose gets stuffed up. If I take chlorpheniramine maleate, an allergy tab, I am able to sleep through most of the night, but wake up especially dry.

Rather than put these comments in Artsyamerican's introductory post, I thought I would start a separate thread.

The main thing I wanted to say to Artsyamerican and others is that even if you are far from a sleep center -- or if the sleep center personnel are not very good at supplying supportive continuing care -- there is some interest and expertise available online.

Tonight I checked out http://www.cpaptalk.com/ which has an active forum with multiple topics. I followed a thread on "support" that included several mentions of other forums.

All of us have been newbies to CPAP. I still feel like one three years later, because the professional staff has moved on and left me behind -- because I'm doing so well? Now that Sjögren Syndrome has entered my life in force, I find different sleep problems cropping up, and have begun telling the Sleep Center "Please pay attention! I am not doing as well as I was." I am going to keep making appointments with the Sleep Fellow I saw, who is more interested and enthusiastic than the director.

Main thing. Start with http://www.cpaptalk.com/ to find other sources of support, and advocate for yourself with the Sleep Center where you got your sleep study.

Best,
Soycoffee

[KellyG999]

Soycoffee,

I am glad you sought support for your CPAP. So many conditions are associated with untreated OSA - Obstructive Sleep Apnea. You are doing yourself a HUGE favor by working on daily CPAP use! Even 4 hours a night is beneficial.

People with chronic pain often exhibit a sleep pattern called Alpha Delta sleep. It keeps you from getting deep, refreshing sleep. Maybe mention this as a clue to your sleep specialist!! They can detect it during a night study if they are looking for it. Treatment is different that CPAP, although if you have OSA you will continue with that treatment.

CPAPTALK.com is a good site, but the members are NOT as kind and supportive as here!

Good luck,

KellyG