Unable to Get Good Sleep after Two Surgeries and 6 Years on PAP

[TiredLime]

Hi there,

First post, but I feel like like I've tried everything. Started noticing symptoms of sleep apnea in my early to mid twenties (brain fog, morning headaches, bed partners reporting I stopped breathing) but it took some years of complaining about it before I finally got a sleep study. ~16 AHI, was given a CPAP. While it improved my sleep slightly, I wasn't able to get good sleep.

Fast forward a few years, I move to somewhere where there's more access to healthcare, and I get my first in-lab polysomnography, ~50 AHI. This has been a theme, take home tests report low scores, in-lab tests report very high scores. My CPAP generally reports 7-10 AHI, never able to get it below 5, and often it shoots up to 15 or more.

I opt for maxillomandibular advancement (double jaw surgery), get that done February 2021. See some improvement, able to sleep without CPAP for a few months but then it regresses severely. Back to where I started, get another take-home test and score around 19-20. My ESS scores are very high. Chronically fatigued and keep having what I call "bad nights" where my machine reports high AHI and I feel like a wreck. Have multiple titrations, with a few different providers, they all tell me that 8-10cm should work, but it never does. Chronically tired, waking up throughout the night, no memory of dreams.

Finally, one provider tells me I should try BiPAP, but when I ask him for a prescription I get another Auto-CPAP (which I already had). He also tells me I have PLMD but pramipexole makes my sleep worse and gabapentin doesn't seem to do much. It's also hard to get appointments with his staff.

Have had a few DISE exams over the years, it's always the tongue base at issue. Opted for a hyoid bone suspension surgery about a month ago, but it has had no effect on the quality of my sleep.

Other things I've tried:
- Allergy tests -- negative for allergies, allergist says I might have non-allergic rhinitis, so am taking nasal sprays every day just in case
- Got evaluated for gastric reflux and eosinophilic esophagitis (negative)
- Bought an adjustable bed frame to keep my head elevated, doesn't seem to make any impact
- Chin straps and mouth tape, neither seem to work
- Custom fitted mandibular advancement device, currently have it set to 8mm, can tolerate it, but can't sleep through the night without also using CPAP
- High pressures with high EPR, lower pressures with no EPR, 5-20 autoset

Currently my BMI is just under 25, and I don't have a large neck. I have a scalloped tongue. Not generally a mouth breather, though I seem to breathe through my mouth at night.

Attaching my OSCAR data from last night. This is one of my "bad nights". My machine seems to detect all the events as "Clear Airway" but in all the sleep studies and titrations I've done, never was I told that I had issues with central apneas.



Where do I go from here? I'm miserable. It feels like I've tried everything, but can't get any relief.

[Miss Emerita]

Welcome! If you live in the U.S., you are entitled to receive a copies of your full sleep reports. It would be helpful to see them, mainly to understand the mix of OAs and CAs you've shown over the past. If you can post them, be sure to blank out identifying information first.

Once we can see the reports, I think there are members here who can offer you good advice.

On the off-chance that you are being affect by apnea PLUS something else, have you been tested for the following: testosterone (if you are a man), thyroid, iron, Lyme disease, autoimmune disease (especially in the connective-tissue-disease family), and vitamins D, B6, and B12.

At what altitude do you live? And what medications or drugs do you use?

[Vako]

So non of your psg tests showed centrals? Have you had your heart check too? Maybe an ASV machine can help if all reports are showing centrals but again psg is not showing so or are they not telling you the full story? Lots of digging to do.

[kteague]

If you have untreated PLMD I would have to wonder how much it contributes to how you feel. Not sure how open your doctor is to doing things not in usual fashion, but the best way to know for sure is to do an overnight lab study while using your machine at the prescribed pressure the whole night. A test without CPAP or while titrating will not show you what your sleep is doing every night on CPAP. It is not unusual for limb movements to increase while using CPAP. Once the CPAP is controlling the respiratory events, the limb movements have more sleep opportunity to more fully manifest. Was your ferritin level tested? Those with PLMD are recommended to keep their ferritin up close to 100. In general, I would also suggest you make sure you are nutritionally sound and that your levels are good on all those things that support muscle and nerve function, like magnesium, Vitamin D, and some of the B vitamins just for starters. Aside from this, I have found using a TENS Unit for at least a half hour at night helps calm my legs. I use the electrodes on my lower back (buttocks) as prescribed for low back pain. These combined efforts consistently practiced have made my PLMD quite livable without meds. It's mild enough this past few years I can go long periods without the TENS. A recent knee surgery has triggered a flare up but the TENS is managing it well. If you can get your legs calm it will be interesting to see what your CPAP stats look like. If your legs cause arousals, it makes sense the machine could misread any breathing variations. Good luck with things.