Viewing a single comment thread. View all comments

williaty t1_jc8qhup wrote

As a fellow CPAP user that's really dug into the details on therapy, my instant suspicion is this: How well controlled are they looking at for "on CPAP therapy"? The clinical threshold for successful therapy is an AHI of 5 or below. However, there's LOTS of patient reports saying that getting from untreated down to an AHI of 5 didn't actually make them feel better. It's pretty common to see patient reports of symptom improvements in the AHI 1-2 range. So if the study is considering people treated/compliant/on therapy at AHI <=5 but the physiologically significant threshold is AHI <=1.5 or something, that's a LOT of people who are "treated" but not actually going to have better outcomes.

Additionally, it's sadly common for patients to start therapy successfully, both in the clinical sense of AHI<5 but also in terms of feeling better but then slowly drift out of the desired range as they gain weight, age, or have other life changes. Again, this could be producing a large cohort that's being counted as treated in the study but isn't getting the health benefits.

But yeah, this worries me too and I'd like to see more detailed investigation.

3

Ian_Campbell t1_jc8sqeu wrote

I'm fully compliant, got my thyroid treated within range, and I'm still getting horrible sleep by how I feel during the day. No hormone panel results like low testosterone or low cortisol. Every day I'm tired in the morning and getting up is a longer process with the machine because waking up isn't enough, whereas when you wake up with no machine you're kind of ready to go.

1

Ol_stinkler t1_jcarts7 wrote

If you don't mind me asking, what does your untreated AHI vs treated AHI and leak look like?

1

Ian_Campbell t1_jcbttox wrote

I have no idea tbh I did a home sleep study before but I couldn't tell you any clue on how treatment changed it. I had moderate sleep apnea before.

2

Ol_stinkler t1_jcc5vpa wrote

Moderate is anywhere from 15-29. May not be a bad idea to do another sleep test and see where you're sitting.

2

Ian_Campbell t1_jcckub2 wrote

I would have to do another home test because I have trouble falling asleep before 6 am even with the meds. I think they based saying it was moderate on how far my blood oxygen fell but I'm sure they tracked the events too. It was enough to get the cpap machine but I have a quite low pressure they told me, around 5.5 whatever the units are, the mercury one I believe.

Since I have anxiety problems and have to use triazolam to even keep from not sleeping days and being totally incapacitated, it could be worth the diagnostics to see what they can do about making sure I get deep phase sleep.

2

ZZ9ZA t1_jcsaoth wrote

I’d find that to be torture, personally. I find that any pressure below around 12 feels like it’s harder to breath than without wearing at all. It isn’t - it just feels that the flow doesn’t instantly adjust, so it kinda feels like you’re breathing through a straw.

(FWIW, on therapy for a bit over 7 years now, using an auto set pressure of 17-20. 20 is the highest my machine goes… actual peak pressure used most nights is around 19-19.2. AHI of <1 most nights, even “bad” nights are 1.5-2ish. I treated I was somewhere in the mid 50s, well into “severe”.

2

Ian_Campbell t1_jcsdla7 wrote

I could try to manually set it and see if I feel better but since I'm fine, I figure there's some medical reason not to do more than necessary and my route is in following up with them. It's just hard to follow up with this stuff without extra money or energy, but at the same time letting 10 years go by half-abled without any help isn't acceptable. It's just hard to have hope when nothing helps, anxiety/depression med route total nope, stims don't help, cpap therapy didn't really help, thyroid replacement didn't really help.

It feels like the deeper you go trying to see specialists the more you are just stranding yourself for nothing.

1