CPAP still not working so did an experiment

[49er]

CPAP isn't for everyone. Many who persist get there in the end. But for some people it's just not for them.

Ignoring your illness, when there is a solution is called suicide. As far as feeling better after stopping xpap, that doesnt mean because you stop rowing your intertube in De-Nile, you wont drown. Jim

Jim,

How is it suicide if someone truly feels worse on cpap vs. off of it and can't function? Contrary to popular belief, there is a population group who has that experience.

Seriously, even if cpap prolongs their life, if their quality of life is greatly compromised, is that truly worth it?

I honestly don't know the answers but I think these questions need to be asked instead of vilifying people who have trouble with the treatment.

49er

[Mozart22]

CPAP isn't for everyone. Many who persist get there in the end. But for some people it's just not for them.

Ignoring your illness, when there is a solution is called suicide. As far as feeling better after stopping xpap, that doesnt mean because you stop rowing your intertube in De-Nile, you wont drown. Jim

Jim,

How is it suicide if someone truly feels worse on cpap vs. off of it and can't function? Contrary to popular belief, there is a population group who has that experience.

Seriously, even if cpap prolongs their life, if their quality of life is greatly compromised, is that truly worth it?

I honestly don't know the answers but I think these questions need to be asked instead of vilifying people who have trouble with the treatment.

49er

I completely agree with 49er. If you're try to get better by using CPAP, but find out that you feel so exhausted that you can't function, then what's the point?
On one hand you might be helping your brain and heart, but on the other hand your life is now limited to sleeping 12 hours per day and barely getting off the couch
because of deep exhaustion.

Sleepstar is right to say that CPAP is not for everyone. Those of us who feel totally exhausted don't really have a choice. Stay on the machine but live a life where you can't do anything? While sleep apnea is most certainly not healthy, it doesn't automatically mean everyone will get a heart attack or stroke because of it. Both my parents smoked a pack of cigarettes per day for several decades, and they both lived long lives. Not using CPAP does not automatically mean you're going to die. It has nothing to do with ignoring an illness, we want to get better, but if using CPAP leads to total exhaustion, there just is no point. Better to be tired but functional at least

[Goofproof]

If your O2 levels stay normal you may not be causing much harm. I would be nice if you were getting enougn REM sleep too. Foggy or sleepy, if you drive you put others at risk, yourself included. Jim

[Mozart22]

If your O2 levels stay normal you may not be causing much harm. I would be nice if you were getting enougn REM sleep too. Foggy or sleepy, if you drive you put others at risk, yourself included. Jim

I'd much rather drive tired (no CPAP) than drive exhausted (with CPAP). Those of you who have gotten better with CPAP, that's great!
Alas some of us have felt worse.

[sleepstar]

CPAP isn't for everyone. Many who persist get there in the end. But for some people it's just not for them.

Ignoring your illness, when there is a solution is called suicide. As far as feeling better after stopping xpap, that doesnt mean because you stop rowing your intertube in De-Nile, you wont drown. Jim

When did I say to ignore your illness?
I'm saying CPAP isn't for everyone. That there ARE alternative therapies (MAS, Positional therapy, surgery). Not everyone can use CPAP. This is where other therapies come into play. CPAP is the gold standard - it is the most effective and it is non invasive - if it doesn't work for you, then you go onto other alternatives.

[sleepstar]

Mozart, did you ever go back and ask for a titration on CPAP? The AHI that the machine was giving you could be different from what is actually happening. The only way you will know for sure is with a sleep study.
I think the AHI on the machine is generally fine - especially if people are feeling better - but if you were feeling tired or even more tired, I'd further look into it.
At our clinic if patients are still not feeling refreshed after CPAP, even if there AHI looks low on the machine, we do a titration study. It's likely that your pressure requirements will be different from what the machine shows.
You might be having flow restriction that your machine wasn't picking up. Your PLMS might be worse. There's a variety of reasons why you didn't feel the benefit.
I'd definitely ask for a titration study.

I never had a titration before and I won't get one now. I have no health insurance and very little money. I had to pay for APAP and home sleep test out of pocket.
According to both Sleepyhead and Encore Basic my AHI was almost always under 5 and usually under 3, with a few exceptions. No significant leaks. No significant
centrals. Stopping the apneas was not the problem, the machine did that fine. But I felt much, much more tired when using the machine. It made me feel totally
and completely exhausted. So after several tries, different masks, tweaks, etc, I quit. And now I'm tired but at least functional.

By the way I never said I have PLMS. I think it's the OP who has that. I'm not the OP.

I'm not the only one this has happened, I have seen several other examples. The OP is one of them, but there are several others. CPAP therapy just isn't for me.
I can't continue using a machine that makes me totally exhausted where I can barely get off the couch. It appears OP has the same problem, I don't know how he managed
to go for more than 18 months before quitting.

It's your health. I think you should find a way to fund a titraiton study. Once your sleep apnea is controlled, other disorders are easier to spot. Like PLMS.

[sleepstar]

I don't think people should have a nasty attitude towards those who cannot use CPAP.
I had a lady who tried for 2 years to use CPAP. Extreme claustrophobia. She had severe OSA, and was determined to use it. She went through counselling to address her claustrophobia.
She still couldn't use it.

This is where other therapies came into the picture for her.

It's great that most people in this forum are having success with CPAP. But there are people out there who can't use it either. You might see a few that come here and say they can't use it - but there are many more out there who wouldn't approach a forum to talk about it.

[Mozart22]

It's your health. I think you should find a way to fund a titraiton study. Once your sleep apnea is controlled, other disorders are easier to spot. Like PLMS.

I have no money and no insurance. I cannot get a titration study.
I don't think I have PLMS. My problem is sleep apnea. But even if I did have PLMS there is no reason why CPAP would make me much more tired.
CPAP makes me exhausted, so if PLMS was the problem I should at least feel the same as before, not worse

[sleepstar]

It's your health. I think you should find a way to fund a titraiton study. Once your sleep apnea is controlled, other disorders are easier to spot. Like PLMS.

I have no money and no insurance. I cannot get a titration study.
I don't think I have PLMS. My problem is sleep apnea. But even if I did have PLMS there is no reason why CPAP would make me much more tired.
CPAP makes me exhausted, so if PLMS was the problem I should at least feel the same as before, not worse

Ok. There was nothing else happening at the time to contribute you to your tiredness though right? Weren't sitting exams? Working more? Doing more during the day? It was near Christmas wasn't it? Christmas exhausts any of us haha.

[Mozart22]

It's your health. I think you should find a way to fund a titraiton study. Once your sleep apnea is controlled, other disorders are easier to spot. Like PLMS.

I have no money and no insurance. I cannot get a titration study.
I don't think I have PLMS. My problem is sleep apnea. But even if I did have PLMS there is no reason why CPAP would make me much more tired.
CPAP makes me exhausted, so if PLMS was the problem I should at least feel the same as before, not worse

Ok. There was nothing else happening at the time to contribute you to your tiredness though right? Weren't sitting exams? Working more? Doing more during the day? It was near Christmas wasn't it? Christmas exhausts any of us haha.

No, there was nothing. CPAP is not for me, I have moved on. Thanks tho, sleepstar Good luck to everyone else with their therapy

[kteague]

Mozart, I have no way of knowing what your issues are with CPAP, but I think your situation is very different from the OP. I must not have communicated very well about the interactions between PLMD and OSA, but I don't know what else to say except for comparing situations that are very different can lead to misconceptions. I still don't think the OP has a CPAP problem, but rather a leg problem that affects their CPAP usage. There's a good chance resolving the legs would enable them to use CPAP without the increased tiredness. But hey, I admit I'm jaded when it comes to this leg stuff. My experiences have given me a bit of tunnel vision.

[Loreena]

This is what I've always thought about the freakin' AHI and how I think it might apply to some people. Before I got a data-capable machine (the sleep center gave me a brick) and knew about SA forums, I trusted the sleep center that they titrated me right. I walked around for months unable to work, merely existing, and thinking it was only a matter of time till things "kicked in" and I'd feel better. In other words, I had no idea what my AHI was.

Fast forward to when I get a data-capable auto machine, learn about SA forums, and realize, for me, the sleep apnea medical community essentially sucks, from DMEs to sleep docs to sleep centers. Next I determine what the AHI is, on the pressure the sleep center set, and the AHI turns out to be between 3.0 and 4.0. I tweak till I get the AHI under 1.0 with my new auto machine (I essentially self-titrate, the sleep study for me was a complete waste of money)--EUREKA!! The heavens open and the angels sing--I feel so much better.

So maybe some people can get away with the AHI being over 1 or 2--but let me tell ya, I remember walking around grocery stores, or anywhere, when I was jobless and completely ill and looked at people and thought: "How wonderful it must be to have a brain that feels healthy"--those were my exact thoughts--I think I was on the cusp of insanity for a while. For whatever reason, I think for some people at least, they will not feel the benefits unless they get that AHI under 1 and get past the abominable insomnia phase. Then I think the healing begins. But I really, really feel that the AHI under 1 is absolutely crucial for some people. Maybe you could be one of those?

[kteague]

Loreena, you're right. For some people even those few events can be detrimental to how one sleeps and how they feel. There's generally a percentage of total events that cause arousals and desats, and if even a few are of extended duration with desats, the low count is of little comfort except in knowing it wasn't happening a lot. That's when treatment data can be so helpful. I was feeling quite successful on CPAP with an enviable nightly AHI. Imagine my surprise when I looked at my data more closely one week only to find one of my apneas lasted over 1 minute and another for 46 secomds. Just a 0.5 increase in pressure resolved the random intermittent problem. If someone feels fine with any AHI under 5, that's great. If not, a closer look might make a difference as it did for you. Good point!

[lullaby]

Hi everyone,

OP here. I am enjoying everyone's contribution to this post and i do value every comment. 49'er - sorry if i came across as terse. I didn't mean to and i understand where you are coming from.
Just to reiterate - i'm in no way giving up on CPAP just yet. I've invested far too much time and money to quit now. I guess i get envious when i read about the success stories on here and wonder why it's not happening to me when all my stats seem to say otherwise.
I still believe that my night time twitching is the cause of my problems however i need to get to the bottom of what is causing it. Is it neurological or is it something that is being aggravated by Zoloft? What is confusing me is that my last sleep study (my fourth in two years) indicated lots of rem sleep, and some leg movements though not many. The sleep tech did say my leg movements were independent of pressure movements.
As per my original post, it's just so weird that i still feel slightly better when i haven't used CPAP the previous night. I do mean 'slightly' as it's a case of that versus the total 'stoned' feeling i mentioned originally when on CPAP. I'm in a pretty demanding job (who isn't?) and i definitely function better through the day with a strong coffee and the tired feeling vs just sitting in the office staring at my computer for hours with the stoned feeling.
Anyway, off to my fifth sleep study and mlst at the end of this month. Not sure what it's going to add to the equation but here's hoping

[Sir NoddinOff]

i definitely function better through the day with a strong coffee and the tired feeling vs just sitting in the office staring at my computer for hours with the stoned feeling.

Okay, don't get your knickers in a twist, but I'm still brain storming here. Have you tried eliminating the coffee and all caffeine from your diet? For me, a veteran coffee drinker from way back, it set off a huge roller coaster wave of energy explosion/implosion throughout the day, generally with everything collapsing in the afternoon. That's when I went looking for alcohol to buffer that bad feeling. You get what I'm saying here don't you? If I may suggest, drop the caffeine for a few weeks or a month, then see how it goes. Tapering off over a few days is the way to go, obviously. What can it hurt to try? Oh no, Sir N.O. has attacked coffee and alcohol... the sky is falling.