CPAP and no sleep apnea?

I hope this is on-topic.

I've had a total of five sleep studies. The first I was diagnosed with OSA. The second, I was fitted with a mask and slept for a total of four hours. I awoke ready to run a marathon. However, CPAP therapy wasn't working well for me because I would continually pull the mask off and often times I felt like I was choking. The other three sleep studies showed negative of OSA. I've been tested for insomnia, narcolepsy, upper airway blockage, pretty much every known sleep disorder. My "final" diagnosis was idiopathic hypersomnia. Super.

But here's the odd thing--why, if I don't have OSA, would I wake up feeling like a million bucks? Why would I have conflicting diagnosi? Two doctors and three tests tell me I don't have OSA; one doctor/test does. Should I just tell my current doctor I want CPAP therapy even though it goes against his opinion?

Do you have copies of all your reports? There could be reasons why OSA didn't show up on some of the tests. I had several tests where it didn't show up, yet I KNEW I had it. And I was right.

Here's some questions that could clarify the discrepancy in your results...
1. How much time did you spend sleeping? Did you sleep enough for them to get a good picture?
2. How much time was spent in the different stages of sleep? Some people have worse OSA in REM. I you didn't get any or much REM the study might not have been able to see your true picture.
3. How much time was spent on your back in the different stages? Some have positional OSA, and it's usually worse on the back. So to see the probable worst case scenario, ideally they like to capture you on your back while in REM.
4. Did your reports make any mention of limb movements? If one has lots of limb movements during sleep they can mask the OSA if they are acting up during the study by keeping one sleeping too superficially or waking too frequently to have a chance to have apnea events. Yet one could at home have periods of fewer movements and sleep deep enough for the OSA to be a problem.
5. Did your studies mention UARS, or Upper Airway Resistance Symdrome? This can disturb sleep yet not technically fall under a sleep apnea diagnosis.

You may be able to get treated based on that one positive test, not sure about insurance though. I don't know how much time you spent on cpap, but taking the mask off early in the treatment is pretty common. Also, feeling like you were choking can be a matter of needing one's treatment adjusted in order to be therapeutic.

Answering the above questions are a good start. Maybe they will provide some clarity.

The tests proved negative for OSA, Restless Leg, Upper Airway Resistance, and Narcolepsy. I do have insomnia however, but it is a symptom and not the actual ailment. The first test showed an AHI of at least 15. The rest of the tests showed less than 5. I think for a full diagnosis the AHI must be at 12, but I can't remember correctly. Each test shows that my sleep patterns are highly fragmented, and my brainwaves jump up into alpha for a brief moment. With the CPAP, these went away, so I still think it's OSA, regardless of what any test says.

I know that (through a nifty little device I use called the Zeo) I have a lack of deep sleep, or slow wave sleep. I was started on Xyrem (GHB...) and after the first night I still feel like garbage, even though I saw an increase in deep sleep (by about 30 minutes...normally I'd get about 20 minutes of deep sleep a night, and I've read by some sources it should be at least 90 minutes.) I don't know what to think--at this point I'm probably going to try light therapy, because I know if I'm in sunlight for awhile I get really exhausted without even exerting myself.

Hi, I think that even though you are probably very sick of seeing doctors, you need to try again. Not another PSG, not another 'sleep' doctor or someone you may convince to let you use Cpap (because it may well make anyone, OSA or not, feel good short term), but a well recommended neurologist, and possibly even someone like an endocrinologist who can look at conditions that may not be obvious or expected, but really give you a good once (or twice) over to cover more than the already covered ones. Just because something does not fit the usual boxes, the ones easy to slot most of us into, does not mean it isn't a factor, or factors, and you should urge your GP to get you seen by others, even if it takes a while to get in. Then come back here and let us know how it all goes. Just feeling good on Cpap does not mean OSA is the problem.

I think there are a lot of things we just don't yet know about sleep, and while it may be a mystery as to why CPAP therapy helps you feel better even if you don't technically have a diagnosis of OSA, it seems to me that the empical evidence supports using the therapy.

Ask your doctor if he will write you a prescription for CPAP therapy. If not, find another doctor. It's really not that hard to find one who would let you use it, even if you don't have an official diagnosis. I have at least two doctors, maybe four (none of which is my official "sleep doctor" at the moment, can you believe that?), that I know for certain would write an Rx in a case like this.

What you may have to cope with on your own is the cost. Your doctor may hesitate to write the Rx because it is likely that insurance will not pay for the equipment. Tell your doctor that even if insurance won't pay for it, you are willing to try it at your own expense. My official sleep doctor possibly would not cooperate if I had your situation, but if he didn't, I would just ask one of the other four to write me a script.

In some ways, that frees you up to get exactly what you need on the free market, provided that you can find a doctor willing to cooperate.

Well, as they say, most of the time when you hear hoofbeats, its a horse..


but then, sometimes its a zebra...

The second, I was fitted with a mask and slept for a total of four hours. I awoke ready to run a marathon.

I would go back the beginning. Your goal is to feel like you did that one morning.. You havent been able to recreate that?

Whatever happened that night, there is a reason you felt like a million bucks. I would focus on that for a bit, what was it
about that night? that morning?

Your sleep study from THAT night, I would study it with a fine tooth comb, like it was a cold case file.. I mean you had a perfect night,
and it has been stolen from you... go over all your pressures, the machine, the mask, the settings used in THAT study..
go over, what you did that day, what you ate, what you didnt do.. One night does not a trend make, but THAT night is a trend you do want to repeat..
so see if you can recreate that.. It sounds like you had so many mask problems you couldnt do that.. but IF you could.. wow,
I bet you want to feel like that every morning..

I had a similar experience. I had a total of 3 sleep studies - the first 2 done at accredited sleep disorders clinic in So. California showed nothing. A doctor recommended I get it done at Stanford Sleep Disorders clinic which is considered one of the best in the world. I was finally diagnosed up there with OSA. Their scoring criteria for respiratory events is more conservative and they have very sensitive testing equipment

But I would keep an eye out for the lab owner MD's who may be in tight with the DME's who push their equipment! Sounds awfully cynical, but it happens, and if two tests showed you were - at best - borderline if not completely non-OSA, I'd be more inclined to believe them than the one who said I did have it.

Undestructed wrote:I hope this is on-topic.

I've had a total of five sleep studies. The first I was diagnosed with OSA. The second, I was fitted with a mask and slept for a total of four hours. I awoke ready to run a marathon. However, CPAP therapy wasn't working well for me because I would continually pull the mask off and often times I felt like I was choking. The other three sleep studies showed negative of OSA. I've been tested for insomnia, narcolepsy, upper airway blockage, pretty much every known sleep disorder. My "final" diagnosis was idiopathic hypersomnia. Super.

But here's the odd thing--why, if I don't have OSA, would I wake up feeling like a million bucks? Why would I have conflicting diagnosi? Two doctors and three tests tell me I don't have OSA; one doctor/test does. Should I just tell my current doctor I want CPAP therapy even though it goes against his opinion?

Hi, This is certainly on-topic. When you say therapy wasn't working well and you were choking and pulling off your mask, did you get any help from your Dr or RT in making pressure adjustments or trying other masks? This is common at first. It's rare that someone can just put on the first mask given and at the titrated pressure and have success immediately. It's a steep learning curve and usually takes lots of reading, asking questions and tweaking. Give us all the info you can. With patience we'll be hearing about your first marathon. Stay with us.

Hi there, you remind me of me. I'm rushing at this very moment, but here are links to my story:

viewtopic.php?f=1&t=47828&p=436955&hili ... is#p433704

and

viewtopic.php?f=1&t=52012&st=0&sk=t&sd= ... is#p479645

Do you have your sleep studies? Can you write down total amount of sleep time, time spent in REM, and ideally time spent on your back, and on your back in REM? Also, the amount of apneas, hypopneas, and RERAs. Compare that information from your first sleep study where you were diagnosed with apnea to the other studies. (You can use my chart as a guide, although you don't need all the information I posted in the chart). Also, what were the results of the CPAP titration? Did they succeed in eliminating your respiratory events, and if so, at what pressure? Note that your AHI or RDI is the number of events divided by the number of hours of sleep. So if you have a normal RDI in NREM, but OSA in REM, you could still end up with an overall normal RDI. I hope this will make sense when you see my data.

Also, if you were originally diagnosed primarily due to hypopneas, here is a link to an article that explains how the various ways in which hypopneas are defined affect the AHI. It can easily change the diagnosis from yes, you have it to to no, you don't, particularly if you were mild to start with.

phoebe368 wrote:I had a similar experience. I had a total of 3 sleep studies - the first 2 done at accredited sleep disorders clinic in So. California showed nothing. A doctor recommended I get it done at Stanford Sleep Disorders clinic which is considered one of the best in the world. I was finally diagnosed up there with OSA. Their scoring criteria for respiratory events is more conservative and they have very sensitive testing equipment

I think phoebe368 meant that at Stanford the scoring criteria is more liberal. So if there is sleep disordered breathing, it's more likely to be caught there than elsewhere--that is, they are unlikely to have false negatives. (Of course their number of false positives may be elevated, for all we know.)

Just to clarify, the OP does not have CPAP therapy because none was prescribed. That is the way I read her post. That is why she cannot "recreate" the original feeling--------she doesn't have a machine!!!

If I'm wrong, please excuse the mistake. I know we are all trying to read between the lines some times, but it just sounded to me like she didn't get a prescription.

However, CPAP therapy wasn't working well for me because I would continually pull the mask off and often times I felt like I was choking.

That made it sound as if she had tried it.. I dont know how often you get to pull of the mask in a sleep study or feel like
you are choking.. Im hoping a sleep tech would get a handle on that sort of thing.. Unless she was cpap intolerant DURING the test?

It did not occur to me that someone would consider a sleep test "therapy"

In any case, I hope she can get to the bottom of this mystery.. and feel good again..

Undestructed wrote: Should I just tell my current doctor I want CPAP therapy even though it goes against his opinion?

And THIS makes it sound like she wants CPAP therapy, even though it goes against her current doctor's opinion of her problem. I'm having trouble reading that another way.

Undestructed wrote:I've had a total of five sleep studies. The first I was diagnosed with OSA. The second, I was fitted with a mask and slept for a total of four hours. I awoke ready to run a marathon. However, CPAP therapy wasn't working well for me because I would continually pull the mask off and often times I felt like I was choking.

Well, hopefully Undestructed will come back and tell us which interpretation is correct. My guess is that he/she had a sleep study, then a titration in the lab, then had problems with CPAP at home, so he/she was brought back into the lab for another study, then two more, for a grand total of 3 negative sleep studies.