1 year of trying CPAP, still stuck - help!

[tgree]

I've used my CPAP for around a year now, and I'm still getting morning anxiety + waking up every 2-3 hours at night. I've attached my OSCAR information for last night:




Background information, things I've tried:
- got tested 3 yrs ago, have an AHI of 17 (31 on back, 3 on side)
- tried positional therapy, better but same problems as before (morning anxiety + waking up)
- got APAP, felt the same, got a titration that said 7 was the optimal pressure
- since then, tried a bunch of settings: APAP, APAP for her, upped my minimal pressure to like 10, reduced it, tried not eating before bed, etc, only thing that seems to help is if I take some benadryl, I still wake up but after 3-4 hrs instead of the usual 1-2, taking too much gives me nightmares
- I can easily fall asleep with the mask, so I don't think that's the problem
- the anxiety happens whether I wear a mask or not, from a nap or late night, but seems to get worse the deeper my sleep is. A 5 minute nap might make me feel refreshed whereas a 10 minute one wouldn't.

Are there any other fixes I could try? At this point I wonder if this is still a physiological problem, but I heard many patients who are CPAP non-compliant get surgery and feel better.

[saytar]

Think carefully about surgery...............several years ago I had my dangly thingy (ulvia) and part of my pallate surgically removed to "Cure" My Apnea..........wrong it didn't cure anything still using an auto CPAP. And as surgeries go that surgery was almost as painful as a bad Gall bladder or passing a Kidney stone.......None, I repeat NONE of them hurt as bad and NONE lasted for several weeks as painful as this surgery was......

Kicker is Surgery did Little for my Apnea....Lots of Pain but no Gain.......I gargled with Morphine laced mouth wash for several weeks......I would consider more trial and error with machines, mask and settings to see if you can gain there.........................surgery should be a last A VERY last option in my book....

[loggerhead12]

. . . but I heard many patients who are CPAP non-compliant get surgery and feel better.

They don't.

[Wulfman...]

got APAP, felt the same, got a titration that said 7 was the optimal pressure

Have you TRIED straight pressure or have you been under the belief that a range of pressures will solve your problems.

It may be that the changing pressures are disturbing your sleep

If you have NOT TRIED straight pressure, I strongly suggest you do!

They say the definition of insanity is doing the same things over and over and expecting different results.


Den

.

[Miss Emerita]

You could certainly try setting min = max to see whether that lets you sleep better. I'd suggest a pressure of 7.4 or 7.6. Turn off the ramp. This will allow you to maintain the same EPR of 3 all night. (The lowest pressure the machine can provide is 4, so you need to be no lower than 7 to get the full 3.)

It is normal to wake up several times a night, often after REM sleep, and there's no harm in it if you fall back asleep quickly and aren't having your cycle of sleep stages disrupted. What I see on your chart, though, are two longish breaks. In earlier posts, I think you were mentioning the need to get up several times per night to pee. Is this still an issue for you? If so, you might think about restricting fluids for at least 4 hours before bedtime and avoiding stuff that has a diuretic effect (coffee, tea, alcohol, and some foods).

Your night started at 4:30 a.m. and you clocked only about 5 hours on the machine. Is this pattern typical for you?

The a.m. anxiety just doesn't sound to me like something PAP connected or sleep-disorder connected. Ideally you could have a few visits with a therapist to explore why the a.m. hours and anxiety are connected for you. And -- just groping around here -- could you consider putting aside 20 minutes soon after you get up for some kind of meditative or breathing practice?

[tgree]

You could certainly try setting min = max to see whether that lets you sleep better. I'd suggest a pressure of 7.4 or 7.6. Turn off the ramp. This will allow you to maintain the same EPR of 3 all night. (The lowest pressure the machine can provide is 4, so you need to be no lower than 7 to get the full 3.)

It is normal to wake up several times a night, often after REM sleep, and there's no harm in it if you fall back asleep quickly and aren't having your cycle of sleep stages disrupted. What I see on your chart, though, are two longish breaks. In earlier posts, I think you were mentioning the need to get up several times per night to pee. Is this still an issue for you? If so, you might think about restricting fluids for at least 4 hours before bedtime and avoiding stuff that has a diuretic effect (coffee, tea, alcohol, and some foods).

Your night started at 4:30 a.m. and you clocked only about 5 hours on the machine. Is this pattern typical for you?

The a.m. anxiety just doesn't sound to me like something PAP connected or sleep-disorder connected. Ideally you could have a few visits with a therapist to explore why the a.m. hours and anxiety are connected for you. And -- just groping around here -- could you consider putting aside 20 minutes soon after you get up for some kind of meditative or breathing practice?

The reason why I got diagnosed with sleep apnea is because of my morning anxiety - my neurologist says that's a common reason, and I get it no matter how happy/stressed I am. In fact, the worse my quality of sleep, the less anxiety I feel (I suspect it's because it's less REM sleep/OSA).

The time zone is set wrong, but in general, yea. I wake up several times in the middle of the night filled with anxiety, and depending on willpower I sometimes would take the mask off to sleep for a portion, and then I'd put it on again, rinse and repeat. Even if I don't drink water, I'd wake up.

I've tried a higher pressure, but I read that it might cause central sleep apnea? I did have a night where I put on a pressure of around 8 and had a refreshed night, but didn't happen afterwards no matter how hard I tried. I'll try 7.4 without the ramp tonight!

[Miss Emerita]

For some people, higher pressures will increase CAs, but that's not a reason to avoid experimenting. In any case, at max = min = 7.4, you'll be well within your usual range.

With your PAP treatment, you are not experiencing sleep apnea, so I continue to wonder about the idea that apnea is the cause of your morning anxiety. You might want to ask the neurologist why this symptom persists despite your successful apnea treatment.

Keep us posted with information about how the new settings work for you.

[tgree]

For some people, higher pressures will increase CAs, but that's not a reason to avoid experimenting. In any case, at max = min = 7.4, you'll be well within your usual range.

With your PAP treatment, you are not experiencing sleep apnea, so I continue to wonder about the idea that apnea is the cause of your morning anxiety. You might want to ask the neurologist why this symptom persists despite your successful apnea treatment.

Keep us posted with information about how the new settings work for you.

I think the reason is because my apnea isn't treated - I feel tired throughout the day, I wake up multiple times in the middle of the night with my heart racing, and these symptoms get worse with alcohol and better when my sleep is less deep/interrupted by external factors.

There's multiple pubmed articles on people who got MMA or ESP surgeries that feel more awake despite having a higher AHI, so I scheduled my surgery for after I get my vaccine, but looking to mitigate as much as possible in the meantime. I tried 7.4 last night, didn't work, will try again and see. Thank you so much for the help

[Miss Emerita]

I think the reason is because my apnea isn't treated - I feel tired throughout the day, I wake up multiple times in the middle of the night with my heart racing, and these symptoms get worse with alcohol and better when my sleep is less deep/interrupted by external factors.

I'm puzzled this comment. You clearly do continue to have sleep problems, but with PAP treatment, apnea isn't one of them. So I hope you and your neurologist can sort out what IS causing your sleep problems.

I would listen carefully when your doctor describes the potential benefits of MMA or ESP surgery. While those procedures could potentially give you results for apnea like those you are achieving with PAP, would they also address the additional issues you've identified? That would be the big question for you to ask your doctor, I think.

[cyberdreamer]

For some people, higher pressures will increase CAs, but that's not a reason to avoid experimenting. In any case, at max = min = 7.4, you'll be well within your usual range.

With your PAP treatment, you are not experiencing sleep apnea, so I continue to wonder about the idea that apnea is the cause of your morning anxiety. You might want to ask the neurologist why this symptom persists despite your successful apnea treatment.

Keep us posted with information about how the new settings work for you.

I think the reason is because my apnea isn't treated - I feel tired throughout the day, I wake up multiple times in the middle of the night with my heart racing, and these symptoms get worse with alcohol and better when my sleep is less deep/interrupted by external factors.

There's multiple pubmed articles on people who got MMA or ESP surgeries that feel more awake despite having a higher AHI, so I scheduled my surgery for after I get my vaccine, but looking to mitigate as much as possible in the meantime. I tried 7.4 last night, didn't work, will try again and see. Thank you so much for the help

Surgery isn't a silver bullet and usually comes with a whole host of problems which are seldom mentioned to the patient beforehand.

Since your apnea results are very good according to OSCAR, your remaining problems may not be apnea and the surgery might create more problems than it fixes.

From that single picture you posted, your sleep times seem awful (bed by 4am and then sleeping for only 5 hours). In my opinion, it's no wonder you feel awful. I'd try getting a proper bedtime and sticking to it as a first step. Read up on the circadian rhythm.

[tgree]

Re: sleeping time - my clock isn't set properly, I actually sleep at 11-12am most days

Re: surgery - yep, I looked at the 20+ studies, relapse rate, talk to my doctor (who pioneered ESP). I'm so familiar with the results I can tell you flaws/blind spot in most studies
This is a common thing that has been mentioned by patients on forums as well in the published papers - some people get apnea symptoms despite CPAP, but after getting surgery they don't get those symptoms. Some studies suspect that this is a compliance issue, but there are patients who swear they use CPAP all the time and just couldn't get it to work despite low AHI.

There is one blind spot I have, which is this could be a problem that I haven't suspected - please let me know what else it could be! My neurologist, sleep study, sleep endoscopy, and symptoms all suggest that it's probably a sleep apnea problem, but please let me know if there's anything else that might fit these symptoms:
waking up several times a night, despite not needing to pee
feeling anxious after waking up
feeling fatigued most days despite getting 8-9 hours of sleep
alleviation of the symptoms above when my speed quality is worse (being constantly woken up, etc)

I guess an experiment I could do is drink/do things that are supposed to make my apnea worse, and see if I feel the same since my APAP would just compensate for it. (incomplete thought will think about it more)

Thanks again for all the help

[Pugsy]

waking up several times a night,

That's sleep maintenance insomnia....google its causes...the list is miles long and OSA is but one tiny item on that miles long list.

Not all our problems are caused by OSA or airway issues and cpap can only fix airway problems...it doesn't do a damn thing for any problem caused by something unrelated to the airway no matter how much we might want it to.

But feeling crappy because of poor sleep quality or fragmented sleep...that's to be expected and no big surprise.
The hard part is figuring out the cause of the poor sleep because to fix a problem we first have to identify the problem.
Don't assume the problem is always only OSA or airway related issues and cpap should fix it. I wish it were that easy....fixing airway issues alone is really simple but if the poor sleep isn't from airway issues....best cpap therapy in the world isn't going to fix poor sleep caused by anything else.

[tgree]

waking up several times a night,

That's sleep maintenance insomnia....google its causes...the list is miles long and OSA is but one tiny item on that miles long list.

Not all our problems are caused by OSA or airway issues and cpap can only fix airway problems...it doesn't do a damn thing for any problem caused by something unrelated to the airway no matter how much we might want it to.

But feeling crappy because of poor sleep quality or fragmented sleep...that's to be expected and no big surprise.
The hard part is figuring out the cause of the poor sleep because to fix a problem we first have to identify the problem.
Don't assume the problem is always only OSA or airway related issues and cpap should fix it. I wish it were that easy....fixing airway issues alone is really simple but if the poor sleep isn't from airway issues....best cpap therapy in the world isn't going to fix poor sleep caused by anything else.

Sorry I wasn't being more clear. According to the definition, I don't have sleep maintenance insomnia because while I wake up, I can fall right back to sleep.

[Pugsy]

Everything I have ever read about sleep maintenance insomnia just points to the wake ups themselves no matter if you go back to sleep or not.

Suit yourself if you don't want to investigate a potential cause of your problem.

Have a nice day.

[tgree]

Everything I have ever read about sleep maintenance insomnia just points to the wake ups themselves no matter if you go back to sleep or not.

Suit yourself if you don't want to investigate a potential cause of your problem.

Have a nice day.

I'm not trying to be confrontational, I'm genuinely curious about what else could be causing my problem, but from John Hopkins + other sites define it as not being able to fall back asleep:

"Most of us experience mini-awakenings without even noticing them—up to 20 times per hour. When it comes to observable wake-ups, most people have about two or three per night. But up to one in five Americans have difficulty getting back to sleep—a frustrating, sleep-robbing problem that experts call “sleep maintenance insomnia.” https://www.hopkinsmedicine.org/health/ ... k-to-sleep

That being said, I do appreciate the suggestion! Looking for whatever blind spot I might have missed!