So many confusing messages about my sleep

Hi, all. I'm posting to sort through my timeline and maybe someone will have advice from experience or be able to relate. At the very least I will get to organize my thoughts.

I had an in-lab overnight sleep study 2 years ago, where I was found to have an AHI of 5 on my side. I got almost no REM sleep during the study, and most of my apnea incidents were during the brief period of REM. My AHI on my back was 9. The symptoms that prompted me to come in were fragmented sleep--waking up 3-6 times a night--feeling tired throughout the day and frequently getting sick. I was also having problems when I slept on my back. I would wake up from a nightmare about suffocating or drowning, a loud snoring noise, the feeling of my tongue hitting the back of my throat, and sometimes I would feel short of breath. Btw, my Epworth sleep score is always really low because I'm an anxious light sleeper. This does not get me any sympathy with the doctors. I /cannot/ fall asleep accidentally mid-day for any reason--I just feel tired constantly but this doesn't get reflected on that questionnaire.

The doctor considered my AHI not high enough to go through the hassle of CPAP so she sent me to a dental specialist to get an oral appliance. I spent thousands of dollars and many hours of my time for them to custom-make this contraption. In the end, they couldn't get it to stay hooked in my mouth. I had several appointments where they tried repeatedly and failed. They sent it back to the lab. Didn't help. Eventually they gave up and sent me home with it even though it has no utility because it won't stay hooked. I was too tired from all the appointments to put up any fight about this--I also gave up.

A year later, still not getting good sleep, but sleeping consistently on my side, I did an at-home sleep test through an online provider. This test showed an AHI of 1. Nothing to worry about! But why were the results different from last time? And then I learned that at-home tests under-report mild cases--which I already know is exactly my case. Since the provider saw some snoring in the test, he suggested I rent a CPAP machine and see if it helps. I did so, but went cheap on the face mask because I had to purchase it. I bought a cheap, uncomfortable, full face mask and couldn't bring myself to sleep with it. Also, no one really showed me how to use and clean the device, and it made noise while I was trying to use it which kept me awake. So the whole rental period passed without me sleeping through the night with it.

I went back to a different in-person sleep specialist several months later, hoping maybe I could do another in-lab study or get a better shot at CPAP. I mentioned the nightmares so they sent me home with an EEG test (sleep profiler) to check for seizure activity. The results only showed that my sleep efficiency was oddly high and I slept for longer than average. I had a lot of awakenings like I thought--they told me they didn't look like apnea incidents, but didn't elaborate on how they knew this (it was just an EEG test, there was nothing in my airway). Anyway, they decided to diagnose me with nightmare disorder and suggested I go on an anti-depressant...even though I don't have the nightmares as long as I don't sleep on my back, and fear of the nightmares doesn't give me insomnia or anything like that. They also suggested I could try CPAP--though they think I probably don't need it, it might make me "feel better" about my anxiety around apnea. But then they went on to tell me that AHI doesn't always correlate to poor sleep quality, and some people with lower AHIs are more bothered by apnea incidents, and maybe I am one of those people.

This whole history leaves me feeling really confused and like this whole thing has been a bit absurd. Should I try a CPAP machine again or not? Do I just need to accept that I'm tired and sick all the time and no one can do anything about it? Why has this process been so complicated and why has it been so difficult to get straight information?

At a cursory glance of your data, I would simply accept that your poor sleep is simply not due to obstructive sleep apnea.

Get tested for a lot of other conditions before you go farther on the Cpap track... you seem to think apnea is the only thing that causes fatigue (it's not) and you need to find out what is the problem. And if your doctor is a dud, get another one.

Waking up briefly 3 - 6 times a night is not necessarily unusual or problematic. When you wake up, do you stay awake for a period of time? How long?

They are very short awakenings. Less than a minute or so. Only recently am I realizing that it's perhaps normal. I still can't sleep on my back though--I jolt awake from the snoring sound or have nightmares which wake me up.

I would have given up a long time ago and concluded it was depression/anxiety related (which I have a history of), except for the first sleep test which diagnosed me with apnea. I just want a medical professional to either conclusively rule it out or tell me to seek treatment for it, but I just keep getting this vague hedging.

It's entirely normal to wake up in between sleep stages, very frequently we don't *remember* waking up, but with the added stimulus of the cpap mask on our faces, it's not at all uncommon to remember waking up. I just usually turn over, get comfy again, and drift back to sleep.

I'm a little less optimistic about not needing CPAP than some of the others. A study that included very little REM may have had a significantly higher AHI had you had a normal amount of REM. There is also something called UARS. Was that ruled out? Waking to snoring and the particular dreams you describe are not to be dismissed too readily. Do you have any issues with limb movements, or jumpy legs when you sleep? I'm sorry I'm not much help. Just want to encourage you to not accept your current answers as the final say.

I'm not sure why you're upset about not being able to back-sleep - it is considered the 'worst' position to use as it encourages apneas and hypopneas which otherwise wouldn't show up - they may have asked you to do it while testing to get a 'worst-case' scenario, but it's not expected that you do it otherwise... side sleeping is the standard suggestion.