Feeling like I was forgetting to breathe

MrRandom · Post by **MrRandom** » Thu Apr 17, 2008 5:45 am

According to the sleep lab I had them at the start of the night, even when asleep, so apparently I was having them even without being aware of it. At home I was very aware of it and it woke me up a lot. I breathe very shallow during sleep, which I guess is the definition of hypopnea, but having a strong wind blowing at me I guess I would just stop breathing *shrug*

Anyway, I unconsciously got used to it by using a stronger force when I exhale. I really notice that I do that when I sleep without the CPAP. So your body will adjust to it, but again I would strongly recommend pushing for a machine with CFLEX or some kind of exhalation relief technology. It really does help a lot to get used to it.

dieselgal · Post by **dieselgal** » Thu Apr 17, 2008 1:36 pm

I use to have this problem a lot before I started CPAP but now that you mention it, that hasn't happened to be in ages. I have been on CPAP for a little over a year now and I started with the Elite S8 with EPR.
I also think 4 is way to low to start with even on ramp. If I were you I would start around a 6 and before you know it you will probably not have to ramp at all.

RonS · Post by **RonS** » Thu Apr 24, 2008 1:41 pm

Let me start by saying thank you to everyone who replied!

Just knowing that others feel the same thing and that nobody has died from it made me relax a lot, I think.
Ooh wait, maybe the ones who aren't posting....

ohhhh never mind.

The next night the problem all but stopped. I've had an occasional occurance, but just onsies and one twosie, never more.

Another thing that may have helped is I noticed that I was breathing very deeply and rhythmically as I was trying to go to bed. Perhaps I was getting a little over saturated with O2 (or under saturated with CO2), so as soon as I wasn't consciously controlling my breathing my body was saying something like: "OK, I can wait a few before the next breath".

Now I just try to go to sleep, don't lie there listening to the mask sounding like Darth Vader, and just relax.

So THANKS to all.

ozij · Post by **ozij** » Thu Apr 24, 2008 9:37 pm

That's very good news, Ron. Thanks for letting us know.

Reading you description of those deep breaths suddenly reminded me of how unnatural my breathing was during the first nights of cpap therapy.

Learning to just let yourself breathe naturally with this unnatural new thing - trusting the machine will do its job - is such an important part of getting the therapy to work!

O.

pjwalman · Post by **pjwalman** » Sun Apr 27, 2008 4:01 am

Woke up at 2 this morning for no good reason that I could tell (didn't have to pee, dog hadn't put his nose in my ear, husband hadn't shifted) and felt so short of breath, like I used to commonly before CPAP, and I thought, "Oh, my God, I must have forgotten to put my mask on and I'm not getting air!" But, nope, it was on my face and blasting air at me at 11 just like always. Goes to show how you can get used to CPAP fairly quickly, I guess, and my little thingamajiggy I crudely made to help make the Flexifit more comfortable and less leaky must have been working well. But here I am typing at 2:46 a.m. because it always takes me a while to get over those things. My thought is that it was one of those "forgot to breathe" things since I felt so short on air, like I had to get up and suck a bunch in before I could lie down again, but I didn't have any sense of having forgotten to breathe like I do in that just-going-to-sleep phase that SnoreDog was talking about. Just woke up feeling like I didn't have enough air. I guess, if it's a central, then the machine isn't going to help, is it? Can your body still somehow be oxygenated through osmosis, even though your lungs aren't physically sucking it in? I know that sounds stupid.

I just am still wigged out -- I HATE this feeling and that it takes so long to get over it! I guess I thought these would be ending with my wonderful new miracle machine, and it bugs me now that I realize it can't fix everything, i.e. it can't tell my stupid brain to tell my lungs to suck all that good air in. I am SO tired and I WANT to go back to sleep, but I'm scared to. Any tricks to recover from that scared feeling, anybody? Are there any special breathing techniques I could use to make my body quit feeling like it's air deprived?

Peggy

rested gal · Post by **rested gal** » Sun Apr 27, 2008 11:41 am

Peggy, since you had central apneas in your sleep study, beyond just normal "sleep onset centrals", it may be time now to talk to your doctor about trying a titration in the sleep lab with an SV machine:

Respironics BiPAP Auto SV
ResMed VPAP ASV

pjwalman · Post by **pjwalman** » Sun Apr 27, 2008 12:16 pm

I see him tomorrow , Laura, and I'll know then finally what his take is on all this. The fact that I didn't hear back from him about my request to go to APAP for my aerophagia leads me to believe maybe I'll be talking to a brick wall, but I'm hoping that feeling will be wrong.

If I did have to go to a BiPAP, if I got the Respironics, would I still be able to use my card reader and EncoreViewer? I have to admit I've gotten addicted to checking each day to see how I did. (Still not great, 8.2 average AHI, average leakage of 42%, but I'm hoping to soon see those numbers go down and will be giggling with glee when they do. )

Thank you again for all your help, Laura! I know it probably seems like I've been whining forever about my central worries , but I just don't know how to be more assertive with doctors -- I let the thought of their importance cow me. Gonna have to work on that, aren't I? Seems like I'm going to have to be a whole lot more assertive regarding this particular malady of mine if I want to get the maximum benefit of the therapy.

Peggy

rested gal · Post by **rested gal** » Sun Apr 27, 2008 12:38 pm

Peggy, yep, gonna have to be more assertive (politely, of course) with your questions to the doctor. But, hey, it's perfectly understandable to feel at first that "the doctor knows best" when you were newly diagnosed and had no knowledge about sleep disordered breathing stuff. It was all brand new to you. There was no way for you to know even know what questions TO ask.

At least now, with the message board info you've been digging into, you have more insight into what might be going on with your particular kind of sleep disordered breathing. Very possibly Complex sleep apnea, which may respond better to a completely different type of machine than the usual.

When you talk to him, be sure you stress asking about an "adaptive servo ventilator" machine...not just "bipap." There are bilevel machines and then there are adaptive servo ventilator bilevel machines (two of those.)

If the doctor starts talking about an "S/T" bilevel, say no thanks. You want to try a "SV" machine...an adaptive servo ventilator machine...not just a "bipap" and not just a "bipap S/T."

The two machines I mentioned in my post above are the only two adaptive servo ventilators, as far as I know. One or the other (no way to know for sure which -- if either -- will do better for you until both are tried) is probably what you need. That is.... if you do have Complex sleep apnea (CompSA, CompSAS, CSDB, CSBD -- all those are "it.")

I'd print out the following page to take along to your doctor's appointment:

http://www.chestjournal.org/cgi/content ... 132/6/1839

pjwalman · Post by **pjwalman** » Mon Apr 28, 2008 7:10 pm

Finally got to see the sleep doc, and he doesn't seem in the least concerned about the centrals! He thinks it is that phenomenon (you have talked about it before, Laura) where you have an obstructive, you start breathing fast to catch up on your air, then your brain thinks you've got enough in your system and doesn't tell you to breathe. I pressed him, asking if most people have that number of centrals on their sleep studies, and he didn't really answer that question, just said that he feels comfortable having me continue as I have been these past three-plus weeks. I asked about maybe using the Goodknight 420E Autopap, and he didn't see the point, because he said no machine would tell us if I was having real centrals, short of me having another sleep study and them shoving some kind of balloon down my esophagus to see if things truly weren't moving (or something like that; I was grossed out enough at the thought that I kind of tuned out). I described to him my husband having to shake my shoulder to tell me to breathe because the machine's whining had woken him up and he watched me not trying in the least to breathe. He just doesn't seem concerned by it. I told him I'm still waking up sometimes feeling so short on air that I'm up for an hour or two until I feel like I have caught up and can lie down again, but he doesn't seem concerned about that, either, just said be sure not to hyperventilate, to breathe slow. Uh...yeah! Figured that one out on my own, and it still doesn't help short of enough time going by for me to get past that awful feeling.

So, at least for now, I am cleared for concern about centrals. He did ask me to come back in a month rather than the typical three or four, and he mentioned he might do some blood gas work on me, but that's it. He was reluctant even to change me over to APAP since he said "You're doing so well, almost 100% compliant, that I hate to change anything." This despite the fact that I'm doubled over in pain sometimes, throwing up sometimes when burping up all that air, and pretty much miserable. He finally said, okay, he'd be willing to try it to see that it would help with the aerophagia but wasn't convinced it would make any difference.

So I'm now "legally" able to use the APAP and can see what's going on and will see if any NRs are showing up. If they do, then I'm tempted to buy the Goodknight 420E on my own, since I have a prescription for APAP now, just to tell myself I can trust this guy. I don't know. It just seems like he's so cavalier about the centrals. But he is board-certified, should know what he's doing, and I need to just trust him, I guess. What do you think? Should I maybe invest in the 420E to do some detective work on my own or just give it the month on APAP and see how I feel by my next appointment in June?

Peggy

NightHawkeye · Post by **NightHawkeye** » Mon Apr 28, 2008 8:20 pm

pjwalman wrote:What do you think? Should I maybe invest in the 420E to do some detective work on my own or just give it the month on APAP and see how I feel by my next appointment in June?

I'll bet you know a lot more in a day or two with the Remstar in auto mode, Peggy. The 420E is a nice little machine, especially great for travel, but not made to do the sorts of things the SV machines do. Yes, it might help you sort out the situation with centrals, but then again, it might not.

I'll be really surprised if the Remstar doesn't help with your aerophagia now though, so I think you'll have a little time to sort this out before your next big purchase decision.

Regards,
Bill

Rachael · Post by **Rachael** » Mon Apr 28, 2008 9:11 pm

I don't have too many of the sleep onset events, but when I first started with cpap a year and a half ago i had a similar sensation, like I was forgetting to breathe, during the day. A lot! It went away after about a month so I forgot about it pretty much. At the time I read a few other threads about the phenomenon. I wonder if any one has studied it?

ozij · Post by **ozij** » Mon Apr 28, 2008 10:02 pm

He was reluctant even to change me over to APAP since he said "You're doing so well, almost 100% compliant, that I hate to change anything."

Eeeek! You'ld think the only aim of this therapy was compliance.

I asked about maybe using the Goodknight 420E Autopap, and he didn't see the point, because he said no machine would tell us if I was having real centrals,

Wrong. Research has shown that the majority of apneas tagged by the 420E as "apneas with cardiac oscillations" are definitely central apnea, and the 420E will not raise it pressure in response to them.

On the other hand, a Respironics auto will continue responding to all apneas till you've had 8 of them within a short time, and only then will it drop the pressure, figuring out that this is not the kind of responsive apnea that needs more pressure.

The diagnosis of a central sleep apnea has to do with no flow, and no muscular effort being made to breath. It has nothing to do with anything being shoved down your throat so see if its really open. Either your doc and you are not talking about the same things, or else he was trying to shut you up because he didn't like your questions, so he basically said: "listen, I can hurt you and make things unpleasant for you if you continue pestering me". Add this to his blantant disregard for your pain -- and all I can say is he frightens me, and I would look for another doctor. Being board certified for sleep medicine does not mean he would not be certified by the bullies and sadist association.

O.
O.

pjwalman · Post by **pjwalman** » Mon Apr 28, 2008 10:58 pm

Either your doc and you are not talking about the same things, or else he was trying to shut you up because he didn't like your questions, so he basically said: "listen, I can hurt you and make things unpleasant for you if you continue pestering me".

Well, you are definitely right about that, Ozij! He did not seem thrilled that I'd been doing some research on things. As soon as I brought up the Goodknight on a trial basis to see about the centrals, that's when he countered with the awful esophagus balloon. I said, "Well, that sounds lovely," sarcastically of course, and he said, "Yes. Which is why we don't do it very often." So he did effectively shut me up!

The man was not even going to discuss my sleep study with me. He reluctantly agreed to trying APAP, said "Well, we'll see you in a month," and I couldn't believe he was essentially dismissing me already. I said, "Hold on! I'm not going to let you out of this room until I talk to you about my sleep study results." He kind of raised his eyebrows at that, listened to my expression of concern about the number of centrals in the study, and that's when he pooh-poohed the centrals, said I must be reading the report wrong. I pointed out the page then, which clearly shows pretreatment AHI of 51.7 central, 45.3 obstructive in non supine and 77.6 central, 31.8 obstructive in supine. And then he went on to explain the kinds of conditions where people have real centrals and pointed out that I had none of the symptoms that would indicate those; thus mine must be brought on merely by the obstructives. Hmm. I suppose. But the centrals outnumber the obstructives, so my mind is having some trouble processing that logic. Of course, maybe one obstructive prompts two centrals. What the hell do I know about any of this? It's all Greek still at this point.

Well, all I know is that I'm damned grateful to have you all here to teach me and hopefully to help me develop more spine! I will let you know what shows up in EncoreViewer in the next few days to see what you think. Thank you very much for walking me through all this gobbledegook!

Guess I should head to bed to try out that APAP, huh?

Peggy

Snoredog · Post by **Snoredog** » Mon Apr 28, 2008 11:29 pm

RonS wrote:
Snoredog wrote:Sorry, but I don't know HOW else to explain it!!

-you wake up because you turned your pressure down because YOU thought it was too high.... that allowed apnea to appear when you are in REM sleep which you cycle through about every 60 to 90 minutes

-next, after the above wakes you up every 2 hours if you TRY and fall asleep it "feels like you have stopped breathing" where you get up and remain for several hours what did I say was sleep onset events?

I also said if it wasn't for you being on the machine when you woke up after those 2 hours you would probably wake in a bed of sweat.

And as sleepycarol pointed out you can be mouth breathing and LOSING all your cpap pressure out the mouth, that is the same as leaving the mask on the night stand, you are NOT going to get the pressure where it needs to be to keep your airway patent.
Please don't start getting all riled up, it's not worth it to either of us.
Why do you feel a need to take a contrary position? How does repeating yourself with the phrase "I said" in front of it do anything for my edification other than demand that I believe you because you said it?

How would you feel if your doctor talked to you like this?

Thanks for your opinions, but please don't demand that I accept them as fact.

rested gal · Post by **rested gal** » Tue Apr 29, 2008 3:35 am

Peggy, if it were me, I'd never see that doctor again. Ever. I'd find a new sleep doctor or I'd "do it myself." From what you've related about what he's said, I don't think he knows what he's doing in your case.

He certainly is not "up" on machines since he doesn't know what ozij (and others on this message board) know about what the PB420E can reveal about centrals happening during treatment.

A good sleep tech could probably spend about fifteen minutes looking at your scored sleep study and give you better information about whether the centrals on your study really were what the "doc" said they were (post arousal centrals following an obstructive apnea) or whether they were a separate problem in and of themselves.

Yes, I'd get hold of a 420E to get at least a glimpse of what may still be going on. But if I saw centrals being marked in big numbers on the 420E's Silverlining data, I sure wouldn't bother to take the download to THAT doctor. He's already made up his mind and doesn't sound like a person open to anything that might contradict what he's already decided.

He's not a "sleep doctor" that I'd have confidence in, board certified though he may be.

Mask

Feeling like I was forgetting to breathe

Re: Feeling like I was forgetting to breathe