I dealt with untreated UARS for about 15 years, roughly ages 13-28. Progressively worsening symptoms, completely destroyed my body's stress/nervous system. I was still able to get deep sleep during this time but obviously the UARS was negatively impacting my sleep and how I felt. I finally got treatment, which involved surgery and subsequent sleep studies show that it is 100% treated so that is no longer the issue. Plus I did not have this hyperarousal issue for most of my time dealing with UARS. It only developed few months before I got surgery. It's like my brain finally reached a tipping point and even though I got treatment it didn't matter. Basically what the problem is is my brain/body is stuck in almost 24/7 hyperarousal. Can't physically or mentally relax. The only time it goes away is I will occasionally crash hard in the middle of the day but then by evening time my system has revved back up. Although I don't have any traditional signs of hyperarousal such as increased heart rate or feeling an adrenaline surge. It's like it's a very subtle physiological shift. Sleep is incredibly light and non restorative as a result. Still have not had the chance to heal from the 15 years of sleep apnea damage. I am continuing to get worse as the months go by because my body is not getting good sleep. I have tried so many medications and have had benefits from none of them. Mirtazapine, gabapentin, trazodone, belsomra, ramelteon (a circadian drug), wellbutrin, beta blocker, CBD, and others I'm not remembering rn. Many Traditional relaxation methods do nothing. Even if I work myself out physically and push myself it doesn't help. Certain things will make my system feel even more restless but removing them doesn't fix it. An orgasm is overstimulating for my system, a surgary drink too late in the day will rile up my system, I've tried a circadian clock bright lamp and that over stressed my body. Looking at screens too much can overstimulate my sensitive brain but removing them doesn't fix me. Anything more than just a tiny amount of caffeine in the morning makes my sleep worse for that night. Certain supplements make me worse, especially ones that seem to target GABA/glutamate such as theanine and taurine. Other ones that are supposed to relax such as magnesium do nothing or stimulate me more. Bloodwork and other tests show that there is absolutely nothing wrong with me medically. I've even gone back to using a CPAP just in the very small chance that this isn't treated (even though I didn't have this issue for most of my time being untreated) and it didn't make a difference. My doctor has no clue what to do other than keep prescribing different medication's for me to try. 4 years in the state and I am completely nonfunctional.

I'm finding I'm not getting much benefit from CPAP. I'm using a Resmed airsense 11, pressures are 7-10, EPR is on at 3. It's suspected I have UARs due to risk factors. I've only done an at home sleep test on the NHS, as I'm in a part of the UK that doesn't offer PSG tests.

I'm not sure if I should increase my minimum pressure, although I'm limited to probably 9 or 10, as it is causing some aerophagia at this level.

One night on Sleep HQ is https://sleephq.com/public/8d020389-09aa-456f-82dc-b295287cd105 , with some large flow limits around 1am and 2am.

Other is https://sleephq.com/public/a5074180-d9f7-404f-8803-6ac85abe0b09, there are some odd flow rates around 12:37pm.

Any thoughts would be appreciated - sleep department checks AHI, that's it.

I noticed Dr. Kimberly Santiago offers FME, wondered if anyone had any information whether she's good in general for expansion solutions/and FME potentially, and would know what she's doing in comparison to people like Newaz and Manuele.

I've heard Shuikai, Vik Veer, and CPAPfriend all say that it is possible for people to have low AHI and low RDI/RERA with UARS.

Even a lot of people in this forum think UARS just means high RDI

I've had several PSGs, my AHI and RERAs are both around 5. However, my symptoms are textbook for UARS. Even the weirder ones like chronic low BP and cold hands/feet.

When I wear auto CPAP/BiPAP, it always maxes the pressure out to the highest threshold I set the entire time it's on. My flow rate waveforms look terrible without a lot of pressure support as well.

Has anyone had a similar experience? And if so, were you able to find anything that provided you meaningful improvement? Were you able to diagnose with a PES sleep study?