Sleeping 14 hours with a CPAP--thinking of quitting treatmen

According to my SD card, I have an AHI of less than 5 most nights that I wear my CPAP machine. Without my CPAP machine (according to my sleep study) I have an AHI of about 10.

When I skip wearing my CPAP machine, I feel pretty good: averaging about 9 hours of sleep per night. However, when I wear my CPAP machine--regardless of the pressure setting (tinkered with pressure settings as as low as five to as high as fifteen)--I need about 13 hours of sleep following by two naps during the day.

It seems irrational to continue my CPAP treatment given the results. However, I have read that many people must make up for "sleep debt," and will initially feel worse when starting their therapy. Given that I have been trying my machine for four months now, I am at the point of just giving up and living without my mask.

Can I live a good quality of life with mild sleep apnea that is untreated?

Maybe, maybe not. The question is, what kind of life are your affected organs likely to live ? For how long ? Good luck, whichever path you decide on.

Sounds like you've already made up your mind... anyway, I doubt you'll find much support for your 'theory' here. That much required nightly sleep points to other medical and life style issues that need to be addressed, but I guess it's easier to just blame it all on CPAP. Good luck with the rest of your life.

Something is obviously way off... but without more info, we can't comment. What machine, which mask, what are your pressures, and are you using Sleepyhead to see what's going on? If not, download it (see 1st forum note "Tutorial"), post reports on Imgur.com and leave a link in this thread. It'll give you lots of useful info on leaks, pressures, flow rate, etc. etc.

I recommend you talk to your sleep doctor. I would also check sleepyhead and see what your stats say. You never know what is going on until it's all checked out. We can't see or feel what you are going through, but I do recommend you check with a doctor to get more info hopefully you get it all straightened out!

Spreech1 wrote:It seems irrational to continue my CPAP treatment given the results. However, I have read that many people must make up for "sleep debt," and will initially feel worse when starting their therapy. Given that I have been trying my machine for four months now, I am at the point of just giving up and living without my mask. Can I live a good quality of life with mild sleep apnea that is untreated?

I looked back at a few of your previous posts discussing your data, so I'm wondering if you've been able in the last couple weeks to be consistent with using your machine? I'm interested in how your situation might change after a month or 2 of 100% use of the treatment for all sleep. There are people who for whatever reason don't thrive on CPAP, but knowing my own history, I found out the hard way how woefully inadequate spotty treatment is for recovery. You can't know for sure it will not work for you unless you've really done it as intended. Since you have access to data you have an edge on some who struggle blindly. As for your diagnosed AHI of 10, I'd want more details from the study before I accepted that as a good representation of your usual sleep. For instance, did you get a good amount of REM sleep while supine? If so, the number is more likely to be close to your usual experience. If not, your actual AHI is quite likely higher. And while <5 is the treated guideline, many of us need it to be much less to feel good.

It may be you have other things going on in addition to OSA. It can take time to sort through these things, and it can be an incredibly discouraging process. My extra issues were medication side effects and RLS/PLMD. When I was still utterly miserable, for my own sanity I had to "bottom line" some things. OSA was the one factor that had tangible evidence. I could KNOW treatment was doing what it was intended to do in keeping me breathing and keeping my oxygen levels up. It really was unrelated that I still felt like crap. Over time, the CPAP treatment gave me just enough recovery to have the energy to tackle the other issues. I can only encourage you to persevere and see what's on the other side for you. If you are like me, going backwards isn't a good option. If so, you'd never have needed testing. Good luck with everything.

kteague wrote:

Spreech1 wrote:It seems irrational to continue my CPAP treatment given the results. However, I have read that many people must make up for "sleep debt," and will initially feel worse when starting their therapy. Given that I have been trying my machine for four months now, I am at the point of just giving up and living without my mask. Can I live a good quality of life with mild sleep apnea that is untreated?

I looked back at a few of your previous posts discussing your data, so I'm wondering if you've been able in the last couple weeks to be consistent with using your machine? I'm interested in how your situation might change after a month or 2 of 100% use of the treatment for all sleep. There are people who for whatever reason don't thrive on CPAP, but knowing my own history, I found out the hard way how woefully inadequate spotty treatment is for recovery. You can't know for sure it will not work for you unless you've really done it as intended. Since you have access to data you have an edge on some who struggle blindly. As for your diagnosed AHI of 10, I'd want more details from the study before I accepted that as a good representation of your usual sleep. For instance, did you get a good amount of REM sleep while supine? If so, the number is more likely to be close to your usual experience. If not, your actual AHI is quite likely higher. And while <5 is the treated guideline, many of us need it to be much less to feel good.

It may be you have other things going on in addition to OSA. It can take time to sort through these things, and it can be an incredibly discouraging process. My extra issues were medication side effects and RLS/PLMD. When I was still utterly miserable, for my own sanity I had to "bottom line" some things. OSA was the one factor that had tangible evidence. I could KNOW treatment was doing what it was intended to do in keeping me breathing and keeping my oxygen levels up. It really was unrelated that I still felt like crap. Over time, the CPAP treatment gave me just enough recovery to have the energy to tackle the other issues. I can only encourage you to persevere and see what's on the other side for you. If you are like me, going backwards isn't a good option. If so, you'd never have needed testing. Good luck with everything.

For sure a ......+1

Spreech1 wrote:According to my SD card, I have an AHI of less than 5 most nights that I wear my CPAP machine. Without my CPAP machine (according to my sleep study) I have an AHI of about 10.

When I skip wearing my CPAP machine, I feel pretty good: averaging about 9 hours of sleep per night. However, when I wear my CPAP machine--regardless of the pressure setting (tinkered with pressure settings as as low as five to as high as fifteen)--I need about 13 hours of sleep following by two naps during the day.

It seems irrational to continue my CPAP treatment given the results. However, I have read that many people must make up for "sleep debt," and will initially feel worse when starting their therapy. Given that I have been trying my machine for four months now, I am at the point of just giving up and living without my mask.

Can I live a good quality of life with mild sleep apnea that is untreated?

Spreech, if you are needing so much more sleep after using Cpap, you should discuss this with your doctor. Something is not right. In some cases, Cpap creates a secondary problem and perhaps that needs to be addressed.

I feel the need to share my experience with you thus far, because I completely understand!!!

So I was enrolled in a blind study for insomnia treatment with various versions of PAP with a monthly Polysomnogram in the Lab. (Dec 2015 to March 2016). This is going to be a little long, but I've put a lot of time a research into analyzing the minimal amount of my personal data I was able to get my hands on, as well as working to understand neurological pathways and mechanisms of reaction in the brain. I hope you dont give up on PAP if you are hypoxic at night (I prefer the term suffocating, I feel it gets my point across easier to most people). and if you have an overnight Lab Polysom report, look at it! There is a ton of info in there, you just have to figure out the language Someone above mentioned RLS, see if you have anything in your report about PLMI, LMI, SLMI, WLMI, key words here: LIMB MOVEMENT you get the idea.... If you do, you should read my story below, Unfortunately sometimes you just have to go "research rouge" but I'm glad I did!!!!! Short version? OSA treated.. life still sucks... oh by the way (4 months later).. you have RLS too. See novel below lol....

Here is what I've known throughout the time period of the study - i saw NO data until the end.
Dec - totally non-functional (severe psychiatric/physical), started PAP (found out ResMed ASV after study completion). I was told at this time that I has Obstructive Sleep Apnea. I truly wish I had the information I have now 15 years ago
Jan - started feeling better than I had in years (I became aware that i was still here mentally (I know that sounds bad, but true), still really tired)
Feb - Felt like A MILLION DOLLARS!!!! I was told at this point that they had me a PAP level of about 70% of where they wanted me to be (most psych symptoms that I have had for years, despite every combination of medication possible, had mostly dissipated completely, and get this... I went to the gym!! and didn't sleep the following 72 hours)
March - April - increasing fast decline back to my own personal hell (basically back to end of Dec/ beg Jan)

At the end of the study I was absolutely miserable. I was at that time told I had a RLS factor that could not be addressed previously due to study protocol, this was all I was told. They had my iron level tested (it was at 48, and it is recommended to test iron deficiency as an RLS indicator when lower than 50). I was told to take an iron supplement, and scheduled for an appointment at the end of June... in 3 months. So, I made two decisions. One, I refused to live like this after living the month of Feb. and knowing that life doesnt have to be miserable. every. single. day. And two, there was not even a snowballs chance in hell I had any intention of sitting around for three months for a possible chance that I might get some help.

I'm not a doc, but I went ahead a McGuyver'd myself. 15 years of nodding my head to the doctors without asking questions or doing research has clearly not been working for me. so might as well right? (I still work with doc's don't worry!!!) The CPAP showed that my obstructive index had gone from AHI of 18 down to less than 1.0. (used SleepyHead software to download, and this was on the lab Poly reports) However, when I looked at the polysom reports from the lab at my SLMI (sleep limb movement index) there was a VERY CLEAR MESSAGE, and unfortunately you will not see this from any CPAP data, it is from the Lab Overnight Poly. Here are the highlights:

Initial: AHI 18, SLMI 54 (REM%20 but all at the same time, grrr) (note LMI >15 can indicate RLS) - it was at this point that I felt like death
Feb: AHI 3, SLMI 26 (REM 6. - this is where i felt amazing (relative to the last 15 years, and based on that data? Life can get even better!)
End of March: AHI 0, SLMI 54 (oh, and REM% 0.0)
Clearly I have an RLS issue, and I had NO symptoms while awake

So, I took the iron supplement for the month of April and still felt horrible.It didn't matter how much I slept, it didn't matter if I ripped the pap mask off in the middle of the night which i tend to do lol. Summary at this point: Im better off with the PAP than without, however, it is not the only problem. I continued my neurological research on how to address the PLMD (periodic limb movement disorder, for me the RLS only becomes symptomatic during sleep, so I was completely unaware of it). My next plan was to find a way to address my pre-sleep anxiety, the OSA, and the PLMD. YAY!! Here's the issue, lets say you take an rx to control the RLS, it can also relax the throat and worsen the OSA. As you can see in my case, as the OSA treatment is optimal, the RLS kicks up!!!

But, my AHI is at a good level, so for now I am not adjusting my PAP settings.I decided to address the PLMD/anxiety with one medication (I didnt want to add two), and keep an eye on my AHI readings from the PAP while I work on getting the med dose to where I feel best. Unfortunately, without an additional polysom lab test I wont actually be able to see the LMI. I tried elemental iron first, didnt make any diff. Tried adding a benzo before bed, fell asleep right away, mental functioning better next day, but still in a coma for 24 hours (stays is system way too long.) Present solution: Continue PAP treatment, ive added a med before bed. It makes me sleepy, and its an anticonvulsant. Part of what led me here was the fact that for seizure patients, it must be taken 3x a day... so I take it at night, calms the legs, and I have no comatose side effects in the morning (effect wears off around 8 hours/shorter half life). I don't know what the rules are on here on sharing med specific info, but if you want to swap war stories feel free to send me a message. Or I can send you some really good links to research I've found. .

Check out your Lab Data, see if there is anything weird. Don't quit your PAP! Lack of oxygen for a decade makes people crazy, not fun! And at the same time, don't let the outside pressure from everyone else be the deciding factor on what you choose to do. And I'm not going to tell you good luck because you dont need luck, trust your gut, and learn as much as you can. YOU CAN DO THIS!!!!

So what 'med' did you start taking before bed? You can say anything here unless you're trying to sell something (which would get your note deleted), the forum's not moderated in the usual way.

Hi! Definitely not trying to sell anything here!!! I started taking Gabapentin (Nuerontin) at 300mg about an hour before bed. I stayed here while slowly tapering down the benzo, so I was still a bit sleepy for a while, but I can say my level of cognitive functioning increased noticeable as the days progressed. I've upped to 600mg Gabapentin before bed (no more benzos) and I'm on day 2 of this actually... still a bit tired today however, I woke up after sleeping 6 hours on my PAP, and got out of bed without feeling forced. Mental acuteness continuing to increase as the days go on. I've read that people tend to reach their tolerance ceiling at 600-900mg for RLS treatment, so we will see how it goes. I started at 300mg and will continue to increase as needed up to 1200mg.

For the longest time I tried taking GABA before bed, and it didnt seem to help. What I found out was, in my case, increasing GABA nuerotransmitter production was not the issue. By adding a benzo/ or in this case the Gabapentin, a component in the rx attaches to the gaba receptor site in the brain, and facilitates gaba reception. It seems "lack" of the nuerotransmitter is not necessarily the issue, its pathway to the brain is inhibited in one way or another. (both the benzo and the Gabapentin essentially work in the same way with the calcium channels)

I would like to say, that on days I was feeling best (in Feb) I woke up, wide awake about every two hours (maybe had to do with completing a REM cycle???) So a solid period of sleep hours on the PAP hasnt been very informative to me in the past. Part of the reason I was not diagnosed prior was that I slept like a rock! If effect, I would have to say i feel better about my sleep without the PAP! The difference was in how I felt during the day.... Three 2hr sleep sessions with the pap, was WAAAAAY more beneficial than the 10-16 solid hours I was getting prior to treatment, in regards to functionality the next day. Now Im having 6 hour PAP sessions without a wakeup every two hours and am feeling better, pretty exciting!

I hope this helps. And what have other people tried? And why?