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Update on my sleep issues

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singingkeys +0 points · about 1 month ago Original Poster Sleep Commentator

I've posted on here quite a few times in the past trying to figure out what was going on with my sleep. I'm 37 years old. 5'8, 150 pounds. Fit and muscular. I have been for all of my life. No other known health issues. For a lot of my life, I've been really tired and couldn't figure out why. In 2018 I had an in-lab study that showed 4.7 AHI and 18 RDI with 50 breathing events over 2.75 hours. I had turbinate reduction and deviated septum corrected. Breathed better upright during the day, but still had sleep issues. After that, I had a home sleep study. 5.2 AHI. In late 2019, I convinced another ENT doctor before this one to write me a CPAP prescription based on my 2018 home sleep study with the 5.2 AHI. I tried to set it myself, but I never could get it to work right and never had a titration study.

I just finished a battery of doctors over the past 5-6 months. 3 ER visits in December-January for panic attack-like symptoms (autonomic nervous system going haywire), Cardiologist (and a holter monitor for a month) for a Stress Echocardiogram with ultrasound, etc. No heart issues. Nothing found on the holter monitor for 31 days, even when I reported events. GP doctor, blood work a number of times, nothing found. Gastroenterologist for an Upper Endoscopy of the stomach (in February I had severe stomach pain about a week after the household came down with a stomach virus). The biopsy showed no cancer or bacteria, just a swollen stomach lining (Gastritis). Endocrinologist did blood work and all was normal.

About a month ago, my new ENT/sleep doc gave me a type 2 home sleep study. 13 apneas/hour. He didn't believe it because I don't show any of the typical characteristics of someone with sleep apnea or UARS. Neck is average size, not overweight, I look 20 every though I'm 37, fit and healthy, etc. He even went up my nose with a tube endoscope and said my sinuses looked clear (at least while upright) and said I didn't have characteristics of someone with Upper Airway Resistance Syndrome.

Well, I had my in-lab study a couple of weeks ago. I had my virtual appointment this morning to review the results. He said I have positional sleep apnea and barely had anything on my side, but 64 apneas/hour on my back. 33 RDI which included apneas, hypopneas and RERAs. Lowest 02 was 91% and I slept for half of the night, which he said is pretty typical for everyone. 1 central apnea and 98 hypopneas noted.

As of the past month or two, I've noticed that I get really dizzy and feel kind of top-heavy on my head (feels like I'll tip over) when I don't sleep well enough for days in a row and it goes away when I get more sleep. It also improves when I'm more active and physically doing heavier stuff like lifting stuff or doing something cardio-related, so it may be a little bit of POTS-related stuff or Dysautonomia due to the malfunctioning autonomic nervous system. I now know to try to sleep on my stomach or side since it seems to be position per the doc. He wanted me to try the "tennis balls on clothing on the back" thing...I'm not interested in it. I still have my ResMed Air Sense 10 Autoset. I've got 3 masks from my previous tries. Going to have my titration study soon and see how it goes. I think I have the P30i full face mask, nasal pillow mask and the P10 nasal pillow mask.

If after a number of months the CPAP doesn't go well (or if I simply hate being on CPAP and don't want to be on it for life), I'll opt for surgery to try to correct it. I'm definitely his odd patient given the circumstances and that nothing about me screams sleep apnea. He wanted me to try a dental device first, but I don't want teeth moving around and I've had a lot of dental work and such. Plus he said it could eventually cause jaw problems and I get a little TMJ sometimes already, but minor. Now I know why I wake up in the morning feeling like a truck ran over me. I'm literally waking up every minute on my back. No wonder my anxiety is through the roof with no previous history of it. No wonder I can't concentrate to drive and fall asleep 10 minutes after getting on a bus or riding in the car with someone. Looking forward to feeling better. I know that I'm a mouth breather sometimes (air puffing out of lips like blowing a kazoo), but the full face mask that I've tried so far (the P30i) was awful and made me feel claustrophobic and I normally don't feel that way for anything. The nasal masks are okay and I just switched back to the P10 a while back because it allowed for more air flow. I just hate the hose on the front of the P10 instead of on top of the head like the P30i. I liked the P30i nasal pillow mask the best, but the sides are so flimsy that it cuts off the air flow.

Here's to the future of feeling better!

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