Thanks for your thoughtful comments. You’re absolutely right. At what point do you give up on CPAP and go on to other options? It’s clear from your story and many others I’ve seen that for some people, CPAP just doesn’t work, no matter how long you use it, even with 100% compliance. I’ve have patients with compliance data reporting optimal usage, with no leaks and a minimal AHI, and patients still don’t feel better. Some go on to dental devices and do well, and some don’t. Others try everything and only surgery is able to help them sleep better.

You do hear about patients struggling with CPAP for 6 to 12 months and finally feeling better, but that’s rare. The vast majority just give up and get lost to follow-up. It sounds like you exhausted all your CPAP options and made the appropriate choice.

My theory about why CPAP doesn’t help in some people is that the CPAP itself causes more arousals. In general, people with mild obstructive sleep apnea or upper airway resistance syndrome have hyperarousable nervous systems.

I’m so glad that you didn’t give up and took the initiative to go for the oral appliance. It just goes to show that with sleep apnea, there’s no one best treatment choice. You won’t know until you try different options.

CPAP treatment puzzles me on many levels. I “failed” at CPAP despite working up to a compliance level that thrilled my practitioner. The failure was due to the fact that I never felt better with CPAP use; in fact, I felt worse. I felt like my sleep was more interrupted by the machine, leaks, having something on my face (I am a bit claustrophobic), being “forced” to sleep on my back, getting “rained” on, etc. Eventually, I was avoiding going to bed either because I hated using the machine so much, or because I felt guilty if I did not sleep with it. I know I sound whiny, but I am not a whiny person. I am a health care provider, and typically, I am a compliant patient with a high level of tolerance and adaptability. I was exhausted after years of sleep disruption, so I was highly motivated to do something to feel better. Andy yet, I was feeling worse, so what was the motivation to use the CPAP, and is it really working if that is the case? I did have decent CPAP support when I sought it out, but that did not change the fact that I never saw any improvement. Since the CPAP treatment failed, my diagnosis was altered to include a secondary diagnosis of idiopathic hypersomnia. I was put on Provigil which made me feel great at first, and then the panic attacks set in (and as I reminded my practitioner, the Provigil was just a mask, as my body was still getting beat up by my sleep disordered breathing).

As a result of “failing” the CPAP, I switched to a mandibular advancement device. I noted significant improvement from day one, as it allowed my tongue to clear my airway. It has changed my life. I won’t go to bed without it, resulting in 100% compliance.

So, was CPAP the proper treatment? I was always puzzled that the CPAP treatment encouraged sleeping in supine due to the nature of having so much stuff on the face, putting me in the position that theoretically requires more intervention from the machine due to tongue collapse? I was already arousing 29 times an hour all night long and now I am supposed to sleep with this mask and hose and forced air on my claustrophobic face? It really does not make sense to me. I lost another 9 months with the CPAP. My husband has been struggling with the CPAP for 5 months with the same results; his MAD is bogged down in insurance denials/appeals.

I have followed the blogs on SleepGuide, and I am pained by the number of people who diligently comply with significant effort and report that it took many months to feel better or still do not appreciate much improvement. And yet they battle on.

If CPAP does not result in a patient feeling better, is it really doing the job? How long is it appropriate for a patient to use the CPAP if they are not feeling better? I was my own advocate for pursuing the MAD; none of my sleep practitioners encouraged it (an ENT did). I had become armed with knowledge through your book, Sleep Interrupted. My heart aches for those patients who don’t know the ins and outs of the healthcare world and are unable to advocate effectively for themselves (mostly because they are so exhausted and vulnerable).

I would love to see a study that evaluates those who benefit from the MAD versus CPAP and those who benefit from CPAP versus the MAD.

I agree 100% that education and good support would be critical in facilitating compliance. CPAP is not a simple thing.