My sleep is crap, doesn’t seem to be the machine, what to do?

[emmylouwho]

I’ve been using my ASV again for 4 months and my sleep is sh*t. I took a break for a year after a using it for a year with not much success.  I can wear it all night fine with a nasal mask now and set to Auto, OSCAR data seems fine but that’s not seeming to be the problem. 

I just can’t sleep. I wake up after 2-4 hours and it takes me ages to go back to sleep.  I toss and turn, I’m tired but it doesn’t seem to matter.  Once I do fall asleep, I’m waking up every hour or so which I know is normal after sleep cycles to a degree but I’m staying awake too long. 

My sleep hygiene is good. I can do all the things to set up a perfect night of sleep and the universe seems to deny it every time. Bedroom is very cool & pitch black, mattress is great! I’m not drinking caffeine too late. My partner doesn’t bother me at all. No changes that I can think of. 

I got back to the gym which always made me pass out but not anymore it seems. No big impact on my sleep so far. 

So now what’s happening is I’m laying there awake for over a hour and I take my mask off b/c I don’t want it on my face any longer when I am awake and tossing and turning and guess what?! I fall asleep finally.  This is infuriating to me because I’m not struggling with my machine or mask at this point but I do sleep better without it. 

I don’t have issues falling asleep so melatonin isn’t helpful. CBD Gummies don’t help very much.  Magnesium isn’t helping me sleep but I do take it every night. None of my other meds should be an issue. 

The only other things that come to mind are: could this be a perimenopause symptom? Yes, I know it can be generally speaking. I feel I am too young but I am almost 45…time really does fly by after all. 

Do I still need an ASV? I had predominantly hypopneas which I know ASV can be good for but the main issue was treatment emergent centrals during titration studies. I did have a few in my baseline study (5) but I understand some is normal. Or could my asthma be affecting ASV effectiveness?  

Thoughts? Suggestions? I’m so exhausted and struggling to work.

[DaveL]

I *think* the achilles heal of OSA treatment is there is no thought of wellness or sleep quality.

I've started threads a couple of times.

Questions

How old is your mask?
Is it comfortable?

Would you consider using a humidifier? I'd rather have heated humid air blowing through my nose to my lungs, rather than room temp air with low humidity. Particularly in winter. My climate is different than yours I think.

I put a hose sleeve on my hose. It prevents the hose from getting caught on my bed; it slides when I move.

I use a hose buddy? to support my hose overhead

I move a lot; that's part of my issue. And I get to dash to the washroom at least once a night. Then I get to put my mask back on, and sometimes that doesn't work well.

I hope this helps you. For me, if I have to use all this ....stuff...it had better work.

[emmylouwho]

Compliant for 35 years?! That’s incredible. Machines have come a long way since you began therapy!

Thanks for the suggestions. I do have a heated hose and use humidity. I would die without it since I get so congested. I also have a cover on the hose.
I have a hose hanger and changing to on top of the head hose attachment helped a ton. My mask is new so I know that’s not an issue. It’s pretty comfortable and I get no leaks with it generally which is important with ASV.
I generally flip sides a good bit in my sleep but this is a new normal for me and it’s horrible. It’s probably been almost a year now.

[gainerfull]

Well, on the plus side you're definitely headed down the right path with regard to optimizing your sleep hygiene. CBD / THC makes sleep quality worse but have you considered a child's dose of melatonin (preferalby 0.5mg) to help you fall asleep quickly with the mask on? Some other supplements you may consider are l-theanine and myoinositol but beware, the l-theanine could cause pretty bad nightmares.

Have you had your ASV Oscar data analyzed here? Wouldn't hurt to post some screenshots so we can see a couple nights of your sleep data. Have you talked to your obgyn about doing a female hormone panel to investigate the perimenopause hypothesis?

[DaveL]

It sounds like you are looking after yourself well.
I don't have the skill--I can't interpret OSCAR.

Have you thought of using OSCAR to monitor your sleep? There are many people here who can help you.

My concern--I wondered if my blood oxygen level was ok. I bought a sensor from amazon and measured blood O-two regularly. Then I bought an iWatch 6. I can measure blood oxygen levels any time I want to...an app on my iWatch gives me sleep reports, including blood O-two levels. I figure that if my blood oxygen level is high, my treatment is working. Is it precise? No...but it's good enough for me. I can do an ECG with the watch too.

36 years ago I had my first sleep study in London Ontario. It was at Victoria Hospital....I had to travel through tunnels from the hospital to the old nurse's residence. During setup they put all the contacts on with glue. It took a while. Looking around I could see bugs crawling on the floor. They told me that the Residence was haunted. That spooked me. It was REALLY hard to get to sleep. They kicked me out in the morning. I was waiting at a traffic light to walk across the street. Someone walked up beside me, saw the dry glue all over my face and hair and left in a hurry! I felt like an escapee. Lots has changed.

I've tried running a video camera on myself to see if I could determine what caused sleep interuptions. Didn't help. But I had a lot of those every night.

There's an engineering expression that says "analysis paralysis.

I wish the people that diagnose us and treat us, and design equipment for us had to wear the equipment we use. I've seen videos prepared by "lanky lefty". His mask reviews and banter have helped me.

[Apnea23]

This sounds very much like REM related arousals, especially with the onset time and feeling wide awake, then taking ages to get back to sleep.

You're wide awake when you arouse from REM because you brain is essentially wide awake during REM. It is your body that is paralysed - due to how active your brain is, so you don't act out.

I suspect something is kicking you from REM, but the question is what?

Can you run your ASV in straight PAP mode? If so you could experiment with fixed pressures and keep an eye on centrals, and essentially titrate yourself up from a relatively low fixed pressure of 7cm-8cm.

Sounds odd that for treatment emergent centrals an ASV was prescribed when your original study had only 5.

REM is where our most variable breathing is, and ASV really wants to keep our breathing steady - I don't know if that's compatible for good REM sleep for many people unless they really need the ASV for a central disorder and the trade off is worth it.

[emmylouwho]

Thank you for bringing this up about REM related arousals. It was also on my suspect list and totally forgot to mention it.  The what is the million dollar question I suppose! I really don’t know anything about it but I want to know more.  One curious thing I’ve noticed in OSCAR is that my first period of sleep before I ever wake up, so whether it’s 90 min or 3-4 hours, it’s so perfect. I have zero flow limitations or anything. Then it’s never like that the rest of the night. So many flow limits afterwards and all the awakenings.

Yes, I can run CPAP on it. I just wouldn’t know where to start!  I can try your suggestions. 

I didn’t explain clearly about the treatment emergent centrals. I “failed” CPAP titration. Then failed BiPAP titration. They caused severe sleep fragmentation, treatment emergent centrals ( 20s-60s) and made my 02 drop. It went into the 70s and my baseline study only dipped below the 90s to 88 for a minute. Then I had to try BiPAP ST which also didn’t work.  The ASV was immediately golden solution & during that titration, AHI was under 2.

LankyLefty on YouTube pretty much said the same as you about the ASV. I think he said most would be better off with a BiPAP unless you’re using ASV for periodic breathing or CAs. I had a horrible sleep doc and experience with the whole study since they put me through 5. So I didn’t go back to them once I got the correct machine. I am driving 2 hours one way for someone that’s supposedly great but my appt is not until Sept.

[emmylouwho]

So I looked @ the PAP setting and it’s very basic it seems? Only option is one set pressure, no range and no epr or anything? It shows Ramp & that’s it.

[emmylouwho]

Gainerfull,

Thank you for your reply. I posted some shots awhile back and Sleeprider said my therapy looked excellent. That was a zoomed out view if it matters. I started having a lot of trouble when I switched to a nasal mask though and didn’t get much traction from that post. I switched my ASV to Auto after some reading & it’s helped a lot. I can link those screenshots where I posted some zoomed in views from some areas that had me curious. I’m not that great yet @ interpreting OSCAR but I can understand it when someone explains it. 

So I fall asleep usually within 5 minutes when I first go to sleep. Should I try the melatonin dose you suggested later in the night when I can’t go back to sleep? I do have 0.5. I have another that was marketed for later in the night to take literally at 3 am LOL but it never helped me. 
 I haven’t heard of the L-theanine but will look it up. Thanks for the nightmare warning. Someone else mentioned the myoinositol today on Reddit but I haven’t heard of it as well. Someone else mentioned a different magnesium than what I take now too. 

I have a gyno appt in a couple of weeks and plan on bringing this up with her. However from what I’ve read, it’s hard to get docs to do any female hormone panels unless you’re trying to get pregnant *eyeroll* because they can be so variable which means not too dependable I guess. I’ll see what she says though.

[Motorheadrulz]

Emmy,
Would you like company in this boat? I've had the same problem for 5+ yrs. Search my other posts for background info... unfortuneately for me, I have underlying med issues causing this and am waiting for a couple of surgeries this summer.

Have to looked into CBTI? If not, do a search on here and online vids. The goal is to get off bandaid meds while restricting your time in bed to force a better quality sleep. Then start expanding the sleep window when you see results.

Your local sleep Dr may offer CBTI classes and coaching, or where to get this. Many do not.

There are several national studies referring this as a way to break away from anxiety and hardcore sleep meds to get people back on track. There are also some clinicians who offer this online for a fee.

If anyone tells you to "just download the CBTI app" and expect you to get results, tell them where to go. The program really works best with someone reviewing your sleep diary, making recommendations, and (most importantly) holding you accountable.

As you stated, you can usually fall asleep. Staying asleep is the problem (like me). Stay off the meds and snake oils, they will stop working anyway.