figuring out a pressure, new machine/doctor, meds

[palar]

Very brief version: I was on 10 for a long time, moved up to 11, 12, then 13; 11 and 12 were probably improvements; 13 doesn't seem to be; got a new machine which is giving different AHI numbers than the previous machine; fed up with 13, moving back to 12 on my own now (because it's the weekend and I really feel an urgency in getting back to what was working after giving 13 a multi week trial), but left a message with the doctor explaining what I'm doing.

Longer version:

I am male, early 30s.

I've been using an IntelliPAP AutoAdjust (DeVilbiss) for some time, since late 2012. I moved to a new state in July 2014 and stayed on my prescription of 10 cm h2o constant pressure (philips optilife mask, with four pieces of medical tape to discourage ripping off in my sleep). The IntelliPAP machine generally told me I had an AHI around 7-8 average.

My sleep habits got pretty bad, and I finally pulled a lot of stuff in my life together and got on a regular sleep cycle, no caffeine, no naps, same bedtime every night, etc, which helped a lot.

I went without a sleep doctor from last July (2014) until February 26 (2015). I like the new doctor way better than my old doctor. The old doctor would see me every three months (actually, have his NP see me...), he wouldn't ask for machine numbers, when I told him I had trouble losing my mask he said "well it looks like you've lost some weight, let's do a sleep study" and then I got my pressure lowered. During the sleep study (center that the doctor owns), the tech said he couldn't lower the temperature because the doctor is trying to kep costs down. I can't say for sure this hurt me, but I don't like all that stuff.

The new doctor increased my pressure to 11, then 12, then 13, trying to see what would happen, hopefully to get my AHI numbers below 5. Every increase was rough for the first two or so nights, then settled down, and my AHI improved. Except for 13. 13 was rough for week or two, and I still don't feel right with it. Also AHI got a little higher, and I would alternate nights with high AHI and tons of REM sleep and dreams, with nights with low AHI with not many dreams, and everything in between... So my new doctor suggested I rent a machine for a month, with better data capability, to see what was going on at 13. I said "well, if you think this machine is strictly better than my old machine with cost being no object, I've met my deductible, so I'll just request it as a purchase." So now I have a new machine. PR System One (60 series) REMstar Auto. One obvious improvement on the output: heated tubing, so the humidity can be higher with no condensation. Pretty nice. They had CFlex turned on, which was different from my previous machine, so I turned it off--the idea was to try out with as close to the same settings as before as possible.

The new machine says my AHI was around 1 the first two nights and maybe around 0.6 the third night. Unfortunately two of the three of these days I experienced this thing that I'm calling "weird sleep syndrome." The weird sleep syndrome is not new to me--I used to get it a lot, and more severely. Definitely this time a year ago it was totally unpredictable, and symptoms included anxiety, sometimes teeth hurting, (this is the hardest to describe -->) feeling like part of me is drowning, but sort of more a chemical feeling and not literally a shortness of breath, confusion, feeling like I'm somewhere else, hard to put thoughts together, more difficult to come up with specific words, etc. No fun. It would usually improve later in the day, and if I got good sleep that night, it'd be gone the next day.

I will note that this syndrome is VERY tightly linked to my sleep. So while I don't know what causes it, it appears that I can minimize or prevent it by following my sleep hygiene and by going back to sleep if I wake up early. Also: if I get it, and I manage to get more sleep, it mostly or completely goes away. I'm not willing to take naps except around 3 PM once or twice a week, because I feel they damage my sleep cycle, so that's out of the question for now.

I'm taking Effexor 137.5, and was taking Effexor 200 around this time last year; late last year, my Effexor was brought down, and I noticed that this 'syndrome' got MUCH milder at exactly the same time the Effexor was reduced! So another interesting piece of the puzzle. (I'm taking other meds, but I can only work with one at a time.) The reason the Effexor didn't go down any more is because I got some depression returning, so we halted it, and I did some talk therapy for a while, and the depression is pretty much gone again. I'm continuing the talk therapy.

Back to the present. I'm not sleeping as well with 13, and I'm getting punished by it occasionally by having days with these symptoms going on (albeit milder than they were a year ago). Furthermore, my mood and interest in things are not as good when I don't sleep well. My AHI is well below 5, at least according to my new machine. For the rest of the weekend I've decided to lower my pressure to 12. The final straw was noticing that my weight was starting to drift up again, and that it started to do so the first day I got on 13, after having a flat trend for a while (something I'm struggling with). I left a message with my doctor saying I was doing that, and I'd like to discuss how to go forward on Monday.

So... any thoughts? I'm keeping in touch with the doctor, paying attention to how I feel, paying attention to the numbers... don't think I'm missing anything, but my head's foggy so I thought I'd post here.

[Nick Danger]

Download the Sleepyhead software (check the first announcement at the top of the forum directory for suggestions on that) and check the detailed data. Have you tried running the machine in APAP (or auto) mode? It sounds like you are running in CPAP mode - the nice thing about an APAP machine is it can help you answer these types of questions and fine tune things. Don't get me wrong, it is perfectly okay to run an APAP machine in CPAP mode (that's the way I do it!) - some of us aren't very good at tolerating the pressure changes that go with APAP mode. However, the APAP mode is perfect for fine tuning pressures.

[palar]

Haven't tried running in auto, but for the moment my doctor is pretty interactive so I'm going to work with him directly, so no auto unless he asks for it.

I have sleepyhead and it is extremely helpful.