▲ 4 r/UARSnew
I want to make sure I'm doing everything I can to figure out what I need for UARS treatment. I'm hoping some of the more knowledgeable folks on here have some insights. If you take the time to read this thank you so much in advance! Here's where I'm at so far (sleephq link included):
- 34 YO male, slim build
- I used to be really active but in the past year as my UARS fatigue increased I had to give up working out 😞
- Turb reduction and septoplasty 8 years ago
- Kinda helped but I need to get it touched up- I have external and internal nasal valve collapse on both sides.
- I have a smaller palate (waiting on CBCT results to know how small), recessed jaw, poor nasal breathing, and mouth breathe if I don't use OTC remedies to open nose and keep my jaw up
- Nightly I do a saline nasal rinse and use flonase
- Home sleep study with LOFTA in March. AHI 1.7 and RDI 14
- OSA diagnosis but my symptoms, anatomy, and cpap experience match UARS. I'm convinced that's what I have.
- Tried CPAP (Airsense 11 APAP) for a month. Mixed results at best.
- https://sleephq.com/public/teams/share_links/2d374d37-68f7-4a6a-a423-914c23e12616
- It increased my deep sleep, but I was still waking up and peeing a ton. I still felt insanely tired, and my results often felt unrelated to my settings tweaks. Great one night terrible the next.
- Nasal pillow mask felt great but I struggled exhaling even at moderate pressures
- I had to pause cpap for a few nights prior to another home sleep test (trying to establish care with a local sleep clinic and they required the test...)
- I was using a wedge pillow, body pillows, apnea shield vest to stay on my side, knightsbridge chin strap, and nasal strips in addition to cpap
- I couldn't tolerate pressures much beyond 9 even with EPR 3. I tried higher min pressures and woke up hourly. I will say I never quite got leaks dialed in, I do think there's potential effectiveness with CPAP I could attain with the knightsbridge and the right nasal mask (I only used ffm's and hybrids so far, and I realized those were pushing my jaw back. With it already being recessed this is problematic for me.).
- While pausing cpap I ditched the body pillows and wedge as they were really uncomfortable and causing back problems. I decided to try an internal nasal dilator and kept the knightsbridge and apnea shield
- I have had better results than I had with CPAP doing this!! I say better because I had fewer arousals and had more energy. This could mean a number of things (terrible settings, I need bilevel or asv.., I need MAD to tolerate CPAP, I haven't found the right mask yet, etc. I don't know enough yet to have a conclusion on this)
- To be clear I still feel terrible overall, but more okay days doing this and fewer terrible nights with tons of arousals and bathroom trips (still a problematic amount of both but it's less)
- I have had better results than I had with CPAP doing this!! I say better because I had fewer arousals and had more energy. This could mean a number of things (terrible settings, I need bilevel or asv.., I need MAD to tolerate CPAP, I haven't found the right mask yet, etc. I don't know enough yet to have a conclusion on this)
Current next steps:
- Tomorrow I get fitted for my MAD and get my treatment plan with it, and the dr. will go over my cbct with me, should be informative.
- I have an ENT appointment coming up. My big concerns are the double nasal valve collapse, checking my nasal passages, and wondering about tonsillectomy and adenoid removal (I've been told I have small tonsils, but I'm wondering if it can still help relative to the size of my airway if it's small)
- I want to try a nasal only mask for cpap. I really liked nasal pillows, but I need to find one that works with my knightsbridge chin strap and doesn't feel like way too much going on with my head. My current dilemma is that a nasal pillow mask wouldn't seal properly if I have a nasal dilator in, and that is a must for me until I can get another nose surgery.
- Waiting to get results from 2nd sleep study and hopefully start care with local doc. I want to pursue bilevel prescription, but I'll have to see how they respond.
- I had an airsense 11, but LOFTA let me exchange it for a 10. I did that because I want the option to airbreak it and try bilevel if needed.
- I don't know if palatal expansion or MMA will be needed. With those being major surgeries I want to try other options first. Although being able to breathe well during the day sounds tight.
Is there anything else you recommend that I do, look into, or try? Again thanks if you take the time to read all that and share some advice, wisdom, feedback, or just words of encouragement.
u/-_Falco_- — 10 days ago