struggling with sleep-therapy and depression

UARS-girl wrote:Hello all, I used to post here a lot, but I sort of drifted away as I got used to therapy. I have been on APAP for almost two years for UARS.

This summer I was feeling really well and when I went camping with my sons for 2 weeks I didn't bring my pap. (Not as dumb as it sounds, I don't have oxygen de-saturations, just arousals.) I seemed to do fine so later in the summer I didn't bring my pap on a 10 day trip, and then I was involved in a study and the study masks didn't fit as well... etc. Now it's cold and my husband won't let me turn on the heat and the rain out is killing me. What with one thing and another I have used apap very sporadically and I am so tired, irritable, anxious, etc. I am a wreck. I was so upset by a dumb spiteful comment one of my co-workers made I had to leave work.

I guess my post is mostly a cautionary tale, but I also am posting to ask for encouragement and support. My doctor wrote me a note to stay home for a week and I am trying to get 100 % compliant again and kick my coffee habit and take supplements and work-out in the hopes that I can get back on track. Medications aren't an option for me, but if you have other advice I could sure use it.

Hi-

Just want to let you know that I have UARS (some de-sats, but nothing potentially lethal) and I was 95% compliant for *2 years* on straight CPAP and felt just as badly as you do (tired, emotional, "a wreck", etc.).

Then I finally insisted on a new titration (my first sleep doc had refused to retitrate after my intial study, even though I felt terrible...he insisted it was "all in my head"). As -SWS mentioned, my second sleep doc not only sent me back to the lab but gave the RT's on duty instructions specific to UARS (titrating for flow limitations rather than frank apneas). I came out of there with a prescribed pressure of 13....and my original pressure had been 7!!

Even the morning after the study, I felt more relaxed upon waking than I had in forever. I haven't liked all the side effects of the higher pressure (bad aerophagia the first couple weeks, and I still have quite puffy eyes now), but it has been a total life-changer. It's nowhere near a full solution yet, but in the last 10 months I've been able to run a 5K, had what was diagnosed as an anxiety disorder essentially disappear almost overnight, can stay awake past 9:30 on good days, and get 3 or 4 things done after work instead just 1 or 2.

Also, I'd also recommend trying running your Auto as a straight CPAP (i.e. one pressure all night, instead of "open"). I've been using a "loaner" that's auto capable, but when I try to use that feature I end up exhausted the next morning, even if it's not reporting many flow limitations or apneas. I think just the ramping up and down creates arousals on its own for those of us wired sensitively enough to suffer from UARS in the first place.

Feel free to PM me if you wish as well.

SWS and everyone, thank you so much for all of your help and support. I kept my mask on all night two nights in a row! I think I agree about the heat, we turned it on, now I am going to go turn it up! I turned my humidifier down to 1 and that worked, I just ordered some saline and xylatol based nasal gel and mouth gel. (My mouth is normally fine, but deep in my throat gets dried out.)

I'm afraid I basically did nothing all day, but I did go out to lunch with my aunt, and I am going for a walk with a friend soon. Tomorrow I am going to try really hard to do fun thinks and not just sit on the computer. ( I just noticed the typo back there, I meant fun things, but maybe it was a little message from my subconscious? I really do need more fun thinks.)

Thanks again every one.