Is it possible I was misdiagnosed and CPAP is just not for me?

[Djonne]

Hi! I've recently posted a thread called 'CPAP therapy plain not working' and I still stand by it. I figured I'd post a new one with updates and all.

I've tried pretty much everything people have suggested but without any results. I've tried auto mode, increasing my pressure, taping my mouth, practicing keeping my tongue to the roof of my mouth, etc. and my results are still totally random. My AHI's still range from 2 to 5 no matter what settings I use. On all the OSCAR charts I'm including I had my mouth taped and my leaks can still be pretty good one night and absolutely chaotic the next night with the same settings and no variable changed whatsoever.

I'm starting to really think I was misdiagnosed since I didn't sleep at all during my test except for 2-3 hours where I DID NOT have the nasal thingy taped to my nose, so the data is probably totally unreliable. But on the results they said I had an AHI of 6 and my pulmonologist only suggested CPAP if I wanted to, saying I didn't need it.

Does anybody have any idea what would happen to someone using CPAP when they DON'T need it? I've seriously never slept more badly and never been more tired than since I've been trying CPAP. It's been 6 months now and it's been the most miserable 6 months of my life. The main reason why I think I might not have OSA or need a CPAP is because whether I use APAP or a fixed pressure, even as low as 4-6, I still get pretty much the same AHI's. I've never seen an increase in AHI if I lower my pressure... like there's no relationship between the two AT ALL (my pulmonologist agrees with that). Actually, I've had my best (lucky maybe) AHIs with a fixed pressure of 6, but even then I was at 1-2, never below 1, which is that my doctor would like considering my AHI was super low on the test.

Does anyone have any more ideas or do you guys think I should just give up CPAP altogether? Right now I'm tending towards giving it one last try with a fixed pressure (between 6 and and see how I sleep and feel with that because I know I sleep better with a fixed, relatively low pressure.

Let me know if you need any more info and if there's anything more I could try!

[Djonne]

Due to the limit of 3 attachments per post, here is three more OSCAR charts!

[zonker]

for those playing along at home, here's the former thread-

https://www.cpaptalk.com/viewtopic/t182 ... blems.html

[SleepGeek]

It's also possible your cpap is not adjusted properly for you.

welcome to the zoo!

[Djonne]

I know that SleepGeek, but everyone suggested I use auto pap saying I need more pressure and that only creates more problems. Did you read my post? I said I've tried everything without any success. That's why I'm now gonna just use a very low, fixed pressure because APAP makes my nights worse than anything.

[babydinosnoreless]

Clearly you don't think you have an issue. Don't worry we will still be here to help when you come back in a couple of years after a medical incident forces you to re evaluate. Don't worry many of us here have been down that route. Good luck.

[Djonne]

What are you talking about? I actually do have issues, but I have more issues using CPAP than not using it. Usually, with the lack of severity of my apnea, they don't even prescribe CPAP! (I've always heard they usually prescribe CPAP when the apnea is moderate, which means AHI's over 15 or something)...

I'm pretty sure I have more chances of having medical incidents when I can't sleep a proper night due to blowing air out of my mouth all night long even through solid mouth taping than I do not using CPAP. I was asking if someone had an idea about how it would go if someone was to use a CPAP when they shouldn't be... wondering if that might be my case.

[SleepGeek]

Did you read my post?

I did, which is why I said what I said.

Certainly adapting to cpap can be a challenge. Denial is the very first challenge we all had to face. The older we get the harder it is to accept things like this.

[Pugsy]

Your reports scream poor sleep quality....lots of known awake times when we see breaks in therapy which makes us wonder how many more awake/arousal times there might be.

First thing to do...figure out if the flagged events you see on the reports are real asleep flagged events or SWJ sleep/wake/junk false positive awake/arousal related flagged events.
Go here and watch the videos to learn how to zoom in and what to look for to figure out awake vs asleep.
http://freecpapadvice.com/sleepyhead-free-software
Bear in mind that while they talk mainly about central apneas (CAs on OSCAR) we can have false positive arousal related OAs and hyponeas as well. It's not limited to just centrals.

Remember the machine only measures air flow and it doesn't have any way to know if you are asleep or not.
It records and responds to awake breathing reductions just like it would if you were asleep.

So learn to look for not only flagged events but arousal related breathing no matter if there is an event flagged with it or not.
What we are looking for is evidence of poor sleep in general. Example below.

Also...the usual questions.

How many hours of real sleep do you think you are getting?
How many wake ups do you remember?
What meds do you take?
Any other physical or mental health issues going on that might impact sleep itself or how you feel?

Finally...while people might expect too much from starting cpap and expect it to improve stuff it can't always improve upon....they don't expect sleep quality itself to be worse but lets face it...sleeping with the mask and machine isn't exactly natural and you are having comfort and leak problems so we expect it to mess with sleep in general.
Doesn't surprise me that you feel worse

Lets look for arousal breathing first. There are 2 kinds of arousals...those related to airway issues and cpap will usually help those and there are what we called spontaneous arousals....we don't know what caused them but not airway related.
CPAP doesn't help spontaneous arousals no matter how good the therapy is or even if the AHI is 0.0.

On the report below you will see zoomed in flow rate or breathing...all the ragged looking stuff the person wasn't asleep.
LOTS of arousal/awake breathing going on. The flagged events are arousal related and not real asleep events.
In fact this person had an in lab sleep study and came out with AHI of 1.6...he doesn't have OSA but he does have really crappy sleep in general and of course feels crappy. It's no wonder cpap didn't help.

In this one I circled the arousal breathing...rest of it is mostly asleep breathing so you can get an idea what asleep breathing looks like.


and this one...chocked full of flagged events (all during arousal/awake breathing) and tons of segments of obvious arousal breathing....evidence of a very large number of awakenings/arousals.


You need to manually scroll and look for evidence of segments of arousals and see how many you spot...with or without a flagged event. We don't always remember an arousal/awakening so don't assume that if you don't remember it happening that it didn't happen.

You need to have a chat with your doctor about your sleep study results and the fact that cpap has made your sleep quality worse...not better.

What symptoms caused you to have the sleep study in the first place?

Was it a home sleep study or an in lab sleep study?
If a home sleep study....did you have little sticky leads put on your forehead or around your eyes or on your scalp/hair?
Did you actually sleep decently during the sleep study?

[Pugsy]

Using cpap when a person doesn't really need it....not usually a problem.
No down side to it unless it causes aerophagia issues or central apneas to pop up where they weren't a problem before (this doesn't seem to be happening with you).

It's just air....holding your airway open to prevent it from collapsing.

[Djonne]

Thanks for chiming in Pugsy! After reading a lot of your posts, I hoped you would chime in haha!

It's cool because you point out stuff that I've started noticing on my own.. I have been zooming in on my OSCAR reports every day since the beginning.. I just of course can't show all the zoom ins on here, and YES, it seems like it's ALL arousal related... it seems like I get like 3-4 hours of sleep (when the flow looks like sleeping) without any apneas and then all hell breaks loose with arousal, mouth leaks and lots of flagged events.

Here I'll answer your questions :

How many hours of real sleep do you think you are getting? Hmm. really not many... probably like 3-4 a night... at best.

How many wake ups do you remember? At least 3-4 a night, sometimes way more when I wake up from blowing air through my mouth.

What meds do you take? None! Apart form ibuprofen once in a while and a few vitamins

Any other physical or mental health issues going on that might impact sleep itself or how you feel? Well I've had poor sleep and frequent insomnia ever since I was an infant and I tend to be quite anxious.

And about the comfort of CPAP... actually, I don't have any discomfort problem with my mask AT ALL, I'm used to it and heck, I can't even sleep without it now! The only problem really is when I start blowing air through my mouth and it wakes me up. It doesn't wake me up every night, but it often does, which is why I tend towards trying a lower fixed pressure, because that didn't happen with pressures of 6-7 and my charts looked WAY better most nights.


You need to have a chat with your doctor about your sleep study results and the fact that cpap has made your sleep quality worse...not better. I did... she said I should just stop using CPAP since the treatment isn't working. That's all she says. ''We try treatment and if it doesn't work, we discontinue it. You have very mild sleep apnea so there's no risk to your health and the treatment isn't a necessity''

What symptoms caused you to have the sleep study in the first place? Most women who've slept with me in the last 10 years have pointed out that I stop breathing and it makes them panic, plus I have pretty much all of the usual symptoms of sleep apnea.

Was it a home sleep study or an in lab sleep study? Home study...
If a home sleep study....did you have little sticky leads put on your forehead or around your eyes or on your scalp/hair? Nope, none of that.
Did you actually sleep decently during the sleep study? Not at all, I spent 5 hours tossing and turning and then I removed the whole thing frustratingly, then put it back on and couldn't manage to put the thing that goes in the nose (don't know the name) so it was just dangling on the side of the bed. I have no idea how they could say they had enough usable data with that night...

So final note... with all the arousal events and everything, that's why I think APAP isn't good for me because it responds to all these things and probably jacks up my pressure too much. Both my pulmonologist and respiratory therapists suggest I try a fixed pressure around 6-8. What do you think about that Pugsy?

[Pugsy]

How many hours of real sleep do you think you are getting? Hmm. really not many... probably like 3-4 a night... at best.

No wonder you feel like crap. Sleep apnea or not...treated well or not....that's simply not enough sleep.
Now fixing that problem...not easy.

How many wake ups do you remember? ........At least 3-4 a night, sometimes way more when I wake up from blowing air through my mouth.

Pick a night and scroll through the entire night and manually count the arousal breathing segments you see...regardless of whether or not there are any flagged events. Let me know how many you counted over whatever period of time you counted. You have to zoom in so that you are seeing about 2 to 3 minute segments and it will take a while.
This level of zooming or maybe just a little more zoomed in on...and I have circled the for sure asleep breathing in red.
All that crap after the circle...I was awake and I didn't remember it at all.

or maybe this level of zooming or maybe inbetween the first one.
This is the same segment as above but zoomed in more.

What symptoms caused you to have the sleep study in the first place? .........Most women who've slept with me in the last 10 years have pointed out that I stop breathing and it makes them panic, plus I have pretty much all of the usual symptoms of sleep apnea.

This is the only thing you have said that causes me to think that you do have OSA and that even if the home sleep study was a bit inaccurate (more on that later)....you have a problem. When someone else actually sees the lack of breathing we have to really stand up and take notice.

I tend to be quite anxious.

I kinda gathered as much when I saw your first posts and subsequent posts but I didn't chime in because I felt you were in good hands and I simply didn't have the ability to respond and do you justice. I am having some difficulties with my right hand/wrist which makes typing painful. I was hoping you would get your issues all sorted out without me because I didn't want to start something I couldn't finish.

It's okay to be anxious anyway...heck, if I only slept 4 hours I would be more than anxious...I would be a raging bitch.

I will address my thoughts on the home study in a bit. I need to compose my thoughts a bit and get some links together.

Both my pulmonologist and respiratory therapists suggest I try a fixed pressure around 6-8. What do you think about that Pugsy?

Actually for you in your situation I think it is a helluva idea and what I was going to suggest myself for several reasons.
Main one is we need to get you to sleeping better and while auto mode works great for a lot of people...there are many people who sleep better with fixed mode and I am not so sure that you need more pressure than the 6 or 8 anyway.
If it were me...I would set it at 7 fixed pressure and plug in EPR (whatever feels good to you) and see what happens.

We gotta get you to sleeping better so we have better data to evaluate. With all your probable wake ups there is a strong chance that the AHI you see is made up primarily of SWJ stuff...sleep/wake/junk...false positive flagging.
If you aren't asleep they don't count.

As for your doctor bailing and saying if cpap makes it worse...quit....I am not yet ready to say that because we haven't exhausted all other options.

[Djonne]

Well... so it seems like you agree 100% with the opinions I've developed over the last few months. I'm not willing to quit either, because although I've been feeling worse with CPAP, I was still not feeling very good before and always thought I had the problem. But my pulmonologist isn't entirely quitting, she actually ordered a real sleep lab polysomnography with all the stuff on the head... sorry for my lack of professional terms so she could actually make sure my diagnosis is right. She isn't responsible for the interpretation of my home study and had no idea of the fact I barely slept during the test.

Funny you should suggest a fixed pressure of 7 with EPR.. that's exactly what my respiratory therapist at the DME suggested a few weeks back... I might as well try that! But our friend Jason from the link you sent earlier tends to suggest we always turn off EPR.. what are your thoughts on that?

[Pugsy]

Was it a home sleep study or an in lab sleep study? Home study...
If a home sleep study....did you have little sticky leads put on your forehead or around your eyes or on your scalp/hair? .....Nope, none of that.
Did you actually sleep decently during the sleep study?....
.....Not at all, I spent 5 hours tossing and turning and then I removed the whole thing frustratingly, then put it back on and couldn't manage to put the thing that goes in the nose (don't know the name) so it was just dangling on the side of the bed. I have no idea how they could say they had enough usable data with that night...

Now about home sleep studies...they aren't all equal in terms of the data they collect.
If you didn't have little sticky things on your forehead or near your eyes or in your scalp then the type of sleep study you had didn't actually measure/record actual sleep stages or even if you were asleep or not. We need EEG brain waves to determine sleep status or not and the sleep wave data points are gather from little sticky thingies on your head and scalp.

See here for an explanation of the types of home sleep studies and the data they gather.
I suspect you had a type 3 sleep study...or maybe the type 4.
The most comprehensive sleep study that includes EEG brain waves would be the Type 2 home study.
http://freecpapadvice.com/home-sleep-tests

Unfortunately without knowing for sure if a person was asleep or not we don't know for sure if the home sleep study was flagging real events or maybe awake events.
You probably did sleep more than you thought you did but we don't have any proof.

Did your oxygen levels drop much?.....now it is common for O2 levels to drop a little bit during sleep anyway...3 to 4 % from baseline is normal but if your O2 levels dropped more than that or below 90%.....that's pretty definitive for a diagnosis because it should drop much beyond normal unless something is causing it.

AHI of 6 overall but 16 (I forget exactly what you said) when supine...that's actually also normal to have that happen because you probably spent some time on your side as well as your back and it's well known that AHI can worsen when we are on our backs in a lot of people.
Also...this can happen when in REM stage sleep. I happen to have the REM worse thing myself. Supine sleeping doesn't make all that big of a difference for me but REM sure does.
I had an in lab sleep study....AHI of around 12 overall but in REM over 50 AHI. We normally spend about 20% of the night in REM so the other 80% where my OSA isn't so remarkable that time brought my overall averages down.

In your situation...you know you didn't sleep well at all...so we have no idea if you even got to REM where there is a chance the OSA could be worse...because your sleep study didn't measure brain waves. Could you be like me and have rather mild OSA in non REM sleep and much worse in REM but you didn't have much REM to check??? Entirely possible.
Another reason that people should have a home study that records EEG brain waves. It's extremely important that we know if you slept for one thing and if you did sleep how much time did you spend in REM?
It is very common for people to have REM worse OSA along with supine sleeping worsening OSA.

Because you have had multiple people tell you that they witnessed you stop breathing....I tend to think you probably do have OSA at some level...mild or whatever. To my thinking mild vs moderate vs severe...doesn't really matter all that much. I look it like being pregnant...you either are or aren't...
Mild can be just as detrimental to a person depending on how much it impacts sleep or oxygen levels or whatever.
And if you didn't sleep well...the home study may have under estimated things because you didn't sleep much and there's no way to know how much sleep you actually got.

So.......what to do? Another sleep study but make it a Type 2 sleep study and make sure you actually slept (maybe meds to help you sleep better) is an option.

Doing what your therapists suggest in terms of settings...is another option.

And one other option since you know you are having trouble actually sleeping (and it's not a new problem for you just one that has been made worse with cpap)....OTC sleep aid to help out a bit.
OTC Benadryl is the active ingredient in most OTC sleep aids...small amount usually 25 mg which is a teeny tiny dose.
I take 50 to 100 mg fairly often. It's safe for the most part unless someone can't take antihistamines for some reason or other.

I suggest trying the fixed pressure as I mentioned above and if that doesn't help much then add a little Benadryl (generic is fine and cheap besides) and see if that helps or not.

And learn how to spot evidence of arousals on the flow rate graphs...and remember that it is possible to have arousals/awakenings and not remember them but just because we don't remember them doesn't mean they didn't mess with the sleep stages and prevent you from getting the nice normal progression through each sleep stage that the body needs for the restorative powers of sleep to work there magic.

I ran across a good article a while back that explains why we need all the sleep stages and in needed amounts.
While it was mainly talking about what alcohol does to sleep quality...if you substitute "anything" for alcohol you will see what I mean. Doesn't matter what causes the arousals...the end result is the same.
https://www.sleepfoundation.org/nutriti ... -and-sleep

Finally there are 2 kinds of arousals.....airway related (like OSA does and the apnea events) and spontaneous arousals.
Spontaneous means we don't necessarily know what caused the arousal but again the end result to how it damages sleep quality itself is the same. Much harder to identify the cause though and to fix a problem we first have to identify the problem. I have a lot of spontaneous arousals myself...from pain though. I might remember only a handful of arousals but when I do the manual work to identify the arousal breathing segments I might have 20 over 6 hours...and on bad nights I have counted upwards of 50. When I don't sleep so good because I hurt and I do a lot of tossing and turning I already know that I will have a lot of arousal segments and about 75% of my AHI will be false positives.
A while back I had an AHI of 9.4...whoa...for me that's really high so I went in and did the manual arousal counting and 95% of my AHI was false positives. It was a night after I over did it in my garden and my back hurt like hell all night long.
I slept poorly because of the pain and the AHI reflected a lot of SWJ flagged stuff.

Anyway....I wouldn't give up yet.
1....we don't know if the home sleep study might have under reported
2....you have a history where someone witnessed you stop breathing and often enough that it scared them....that alone would make a believer out of me.

[palerider]

Does anybody have any idea what would happen to someone using CPAP when they DON'T need it?

Yes, NOTHING AT ALL. I've loaned an apap to a couple friends who thought they might have sleep apnea and wanted to try. Looking at their data for a night, the pressure was pretty stable, and the AHI was very low.

I've seriously never slept more badly and never been more tired than since I've been trying CPAP. It's been 6 months now and it's been the most miserable 6 months of my life. The main reason why I think I might not have OSA or need a CPAP is because whether I use APAP or a fixed pressure, even as low as 4-6, I still get pretty much the same AHI's. I've never seen an increase in AHI if I lower my pressure... like there's no relationship between the two AT ALL

You've likely got a fairly mild case (mild defined by the number of events per hour, not by how much it destroys your life), and so the inadequate treatment you're getting from your CPAP doesn't make a huge difference in your AHI, because (I believe) your pressure is *too low* to adequately treat your sleep apnea.

Every one of the images you posted shows events happening and the machine raising pressure to compensate, which means the pressure is too low for you. the max I saw was 8 with an EPR of 2, which works out to having only 6cm to hold your airway open.

If it were up to me, I'd set your min pressure to 10, EPR 2, and see if that won't hold your airway open better.