Surprise: not sleep apnea but arousal apnea

[stevos2000]

A couple of more responses about sleep drugs and stuff:

Gabapentin: I had been taking gabapentin for many years before my most recent sleep study. It was initially given to me when I had a a pinched disk in my neck, but I quickly discovered that it helped me stay "asleep" during the night, without all the frequent conscious wake-ups I had been having before. Of course I was still having fragmented sleep, but it at least kept me sleepy enough during the night so that I fell right back asleep. I have continued with it now that I am on CPAP, as it again helps me to stay "asleep" in spite of the arousals I still have. The sleep literature also reports favorable results with it for restless legs and such, without any associated disturbance of REM sleep or sleep architecture. Plus, it is reportedly a drug you can take long term at mild or moderate doses (and with a sleeping pill).

Ambien versus Lunestra. I was initially given a 10mg ambien by my sleep doc to help me get accustomed to CPAP, but it would stop working for me after about 4 hours. I followed the trick recommended on this board to cut it in half and take the second half when awakened 3 or 4 hours later, as always happened. This would get me 3 or so more hours of sleep, but I was still ending up with only 6 hours or so of sleep. The other thing that I found odd was that I had no recollection of dreaming at all, even though I was clearly bouncing in and out of REM. I now am taking a full dose of 3 mg Lunestra and even with my awakening, I can generally fall right back to sleep. Plus now I can get 7 or 8 or even 9 hours of sleep sometimes, which is much welcomed, even if it is fragmented. And, I am once again aware of the fact that I am dreaming, which I take to be a good thing.

I hope someday to be be able to sleep without either of these drugs. My hope is that I don't have some kind of neurological thing going on, but rather a very severe 30 year sleep and REM deficit that has left me hypersensitive to any kind of disturbance, even while in deep sleep or REM. Its as if my body trained itself to be ready to wake up and breath at the slightest indication of desaturation or stress.

[stevos2000]

Someone asked me about the results of my sleep study, so here does. I've actually had two studies about 4 years apart. The first one I ignored, but by the time of the second I was a believer. Both studies showed an AHI of 7.0. And both studies showed that my desats never went below 90%. When I saw this 4 years ago, I thought no big deal. I thought 7 meant 7 incidents over the whole night. Wrong. Of course, back then I had a disturbance index of 36, which of course was a big deal. Forget about the fact that I would pass out in the weekly review meetings at work at 1:30, even after multiple shots of espresso and my manager sitting next to me nudging me awake. Now, 4 years later, somewhat healthier and leaner, my disturbance index was only 20, but my day time sleepiness is much worse and I'm much more aware of what all these numbers mean. Now, on CPAP, I do feel somewhat better, my AHI's are generally under 1.0, and when they happen, they usually run about 10s or so (as I said earlier, about the length of time it takes me to flip over in the bed). Now, if I could only do something about the REM fragmentation and all those 6s non-AHIs....

[Jade]

gasp, have you tried putting the ponytail on top of your head, so it's pointing up over the pillow?

[gasp]

gasp, have you tried putting the ponytail on top of your head, so it's pointing up over the pillow?

Hi Jade, Thanks for the suggestion, however I haven't yet found bands big enough to go around my hair tight enough to keep it in place. It always slips out of place. I have seriously thick hair and the current bands on the market only go twice. Once they get stretched out I can go three times just until they break which is usually sooner than later. I've tried every ponytail band on the market and Goody seems to work best and even those don't go 3 times for a tight fit.

My hubby was a bit sad at the whole cut the hair thing but for a better night sleep he might be OK with it : )

[Jay Aitchsee]

Stevos,
I was reviewing your posts and saw we have much in common. I, too, have a pretty long history of sleep disturbance, finally got a PSG, took a while, but became cpap compliant, got my AHI down to about 3, but still feel lousy after over a year of compliance. Along with moderate OSA, I was also diagnosed with severe PLMD. (here's a snip from my home sleep lab: http://www.youtube.com/watch?v=mXjXiPaq1mk )
Like you, I feel my awakening are no longer being caused by apnea, but from some other source, likely related to the movements. I have tried most of the drugs commonly used for RLS/PLMD; benzoids, gaba's, dopa's. I found the most helpful to be gabapentin, as well. Although, not helpful enough to continue. Currently, I take ambien and due to the short half-life it only limits the measurable awakenings in the first half of the night. (I have tried Lunesta, but couldn't stand the morning "metal mouth". I may have to give it another try.) Now here's the thing, even with the ambien, I get virtually no deep sleep in the first sleep cycle and very little in the second. (as recorded by my Zeo). Usually, I get about 10 minutes a night, which corresponds to my 3 PSG's. My REM is OK with about 1.25 hrs per night. I was wondering how my sleep stages compared to yours?
Having tried most of the drugs and with my apnea under control, I'm starting to look elsewhere for the cause. Recently, I had a blood test which indicated low normal Vitamin D and B12, so I've began a supplementation program to bring those up. Next check is in January. From the same blood test, I learned my thyroid hormone, Free T4, was below normal, but my TSH was in the mid normal range. My PC dismissed the thyroid issue since TSH was normal, but from what I read, I think there is a problem and I'm going to pursue it. Here I'm wondering if you've had these blood tests?
On other drugs: I've found Provigil to be helpful with daytime fatigue and I take it occasionally if I have something special I don't want to miss. I have tried the fibromyalgia drugs as well, Cymbalta, Savella, etc. I find they virtually eliminate daytime fatigue, but do not improve sleep so I think they just act as stimulants. I found Savella to be the most tolerable, but I think the risks of these drugs far outweigh the benefit. (20% of the non-placebo trial participants developed hypertension with Savella).
I thought with similar histories, it might be useful to compare notes,
Jay
Edited to add: In addition to the above; although abstinate for many years, I have a long history of alcohol abuse. I did read a study which found the sleep architecture of alcoholics was fragmented at least 2 years after becoming abstinate. Kind of goes along with your "learned behavior" theory.

[stevos2000]

Jay,

I ran with Zeo for about a week or so and it confirmed with a previous sleep study had also shown, namely, that I got little or no deep sleep (10 minutes or so) and about 1 1/2 to 2 hours of REM, which was OK, but the REM was totally fragmented. Lunestra helped a lot with getting me a full nights sleep and gave me better dreaming, as opposed to ambien which barely worked at all and gave me no sense of dreaming. I do take strong vitamin supplements and try and get a lot of natural vitamin D (I live in Santa Cruz, CA). Recently, I started taking a magnesium supplement and it has has really helped a lot, with my AHI now averaging 0.3 with much less thrashing and flopping visible in my sleep videos. So you might want to look into that. Everybody's chemistry is different, but it might work for you too.

[Jay Aitchsee]

Thanks for your reply, Stevos.
Magnesium is one of those things I had checked, it was mid-normal, so I didn't supplement it. However, I may try a reasonable daily dose. I know there seems to be a relationship between magnesium and RLS/PLMD.
Funny about the vitamin D. I live in Southwest Florida, am outside a lot, and thought, "my level must be OK". However, when I was tested, it came back at 36, minimum being 30. It seems the current thinking is leaning toward a range of 50-80. With the concurrence of my PC, I'm shooting for the 50+ range with 4000IU daily supplementation. I don't really expect any miracles if I reach that level, but it's one more thing I can rule out, like the apnea.
In the meantime, when I see my sleep doctor next week, I'll ask for trial Rx of Lunesta and give it another shot. Although, other than the short half-life, 5-10 mg Ambien works pretty good for for me, dreaming seems normal and the first two cycles of REM are usually not fragmented. I have tried the Ambien CR at 6.25 mg, but it left me with a too severe drug hangover.

Jay

[toosexyformycpap]

Nightmonkey, this is what my husband does. His feet wind up on his pillow and kick me. But he doesn't complain of not breathing or being tired. ?

[NightMonkey]

Nightmonkey, this is what my husband does. His feet wind up on his pillow and kick me. But he doesn't complain of not breathing or being tired. ?

You keep adding to the story. Previously you posted:

Hubby is a giant 6'4, 250 lbs, sexy football player build. He snores, moves around, tosses all night long, and talks

Now that I think of it, he does drink a lot of caffeine though. Maybe he's not as energetic as I think!

People who have undiagnosed sleep problems for a few years are not good judges of their energy levels. As long as they can function fairly well, they think they are normal. If they look around they see many of their friends and associates need a lot of caffeine to keep them going and complain about sleepiness so this reinforces their perception of their health being normal. Of course many of these associates have sleep apnea, poor sleep hygiene, and just do not allow enough time each day for sleep.

If you think what you have described in the quotes above is healthy, well ....