Thank you for writing this -- I've been through a similar experience since 2017 or so. Tons of things resonate:
- sleeping on my side to avoid positional sleep apnea
- mouth taping works
- allergies can have a large effect on sleep
- having problems with CPAP (initially, see below)
- Having a more UARS-ish case, since I always exercised, and after losing weight I have medically normal / below American-average BMI, etc.
- We're in a similar demographic -- programmer in SF at the time, Chinese American, I'm guessing ~10 years older than you. (One thing I found in my research was a YouTube video by a doctor from Hong Kong saying that Asians have a facial/bone structure that makes them more prone to sleep apnea. I think that is probably true, although there are many other factors too.)
- Realizing this has affected me for 10-20 years (memories going back to grade school). (I also wonder if sleep apnea is adaptive when you're young, and harmful when you're old. I read a book that conjectured this. It's so damn common that it has to be adaptive in some way. It's a ridiculous problem from a biological point of view -- your neck and throat are strangling you to death while you sleep :-/ )
- Having to piece together treatment from multiple health care providers, and doing research on my own.
Though it sounds like I did have better "luck", since I had a very smart and helpful dentist in SF, who was the one who told me I had sleep apnea after 2 incidents of cracked teeth. I initially didn't believe her !!!
She also told me about Christian Guilleminault (and she met him), and I got great referrals from her to a myofunctional therapist in Oakland, who gave me still more good referrals.
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Anyway, I spent years on it, and am in a pretty good place now. I agree with a lot of your conclusions at the end -- it's a very difficult problem to solve, and it's NOT really worth it for a single medical care provider to solve it for you!
It just takes too much effort and expertise.
It's still poorly understood, and I got a lot of conflicting advice, and had to "triangulate" on my own.
Every case is a snowflake. In my experience, every treatment/remedy works A LITTLE, but there is no magic cure. I still have to stay vigilant.
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Since everyone is a bit different, I'll offer up the things that helped me:
- I started with a MAD from my dentist, which definitely worked, but it wasn't consistent, and had side effects of inflaming my gums. Also it seemed to make sleep WORSE some nights.
- I also got a CPAP, which sat in the closet for THREE years. It felt like I was drowning in air, I couldn't keep up and fall asleep with it on.
- I started sleeping on an air mattress, not a bed. And now I've done this for 3-4 years !!! Honestly it makes me wonder about the comment in this thread talking about how a mattress ruined their sleep. I did get a new mattress around ~2012, and I think I started experiencing more sleep problems then, but I didn't realize I had sleep apnea until ~2018 or so.
- I had a "fuzzy and dry eye" problem (that also feels a little like "brain fog", although it wasn't as extreme), that went away after I addressed sleep apnea. I went to doctors about this before I knew anything about sleep apnea. I never read it in any book, and no doctor ever told me, but now I know it was caused by sleep apnea.
- I got the referral to the myofunctional therapist in Oakland. It sounds weird, as you exercise your tongue and mouth muscles. Miraculously, within one appointment, I was able to breathe through my nose consistently, during the day, at night, and while exercising.
I had been a mouth breather for my entire life. I knew that, but I didn't know it was a problem. (It was also quite visible that you can change the muscle tone of your tongue within 8 appointments or so. You can see the difference.)
- I was able to use the CPAP with the nose mask after that, and that's what I still use.
- I also went to a very helpful posture therapist and worked on my breathing during the day, while walking and biking.
- I've kept off 15 pounds since 2017, which definitely helps, but isn't the root cause.
- I also started eating 2 meals a day of whole foods, instead of 3 plus many snacks. And pretty strictly avoiding processed carbs (white bread and even white rice) and processed fats (e.g. fast food).
In my experience, the whole foods make your jaws and teeth stronger and more resilient. (I read "Jaws" by Kahn, Breath by Nestor, and many other helpful books from practicing dentists.)
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So to anyone here who is still struggling, I will just offer that as an anecdote -- the myofunctional therapy, mouth taping, breathing through your nose, helped me use the CPAP.
I had a CPAP since 2018, and didn't start using it until 2021, because I couldn't stand it.
I would say if you're out of options, and can envision any way that you can possibly use a CPAP, make another effort. It might take some therapy, diligence, and time, but it will be worth it.
Thanks again for sharing, and I hope this comment thread helps more people! I definitely sympathize with that feeling of being "out of options", where you dread going to bed at night.