Another newbie-- CPAP woes

Hi All,

I was told about this site and have spent some time trying to find some answers to my issues-- maybe they are here somewhere but my searches have not turned them up yet.

I was recently dx with mild sleep apnea. I went in for a sleep study due to my symptoms of fragmented sleep and daytime sleepiness. I also have Fibromyalgia and other neurological things going on, which I was assuming contributed to my sleep problems.

During my first study my respiratory summary was: 0 obstructive, 7 central, 0 mixed, 62 hypopneas with a total of 69. the AHI was 9.0 and the respiratory arousal index was 7.3 . The titration study showed 1 obstructive, 19 central, 0 mixed, 0 hypopneas. Total 20 with an AHI of 3.0 and RAI of 2.7.

During my titration study I started with the nasal pillows and about three hours into my sleep I woke with the feeling of being suffocated. I would simply stop breathing and every time I tried to fall back asleep I would again stop breathing and waken. I called the tech in and he swapped me out for a full face mask and I was able to go back to sleep and finish the night out. I was rx a pressure setting of 5 and full face mask. I was told that I had mostly central events but that they “might” resolve with continued CPAP use.

Fortunately I had a friend on another forum who steered me through the treacherous waters of the DME and informed me that I needed to demand an autopap with data so I had my PCP rx this. I went home with the ResMed AutoSet II with humidifier. Of course the DME didn't tell me how to access the data and later my friend sent me instructions. I also let the DME tech talk me into the nasal pillows again as they were much less obtrusive than the face masks.

First night with my machine was a repeat of the titration study. Three hours into the night my central apneas kicked in and after struggling with it I turned the machine off (I didn’t know how to access the data at the time so I didn’t see my results for that night). I got a prescription for a nasal mask and picked it up a couple of weeks later (took a while to get the rx from my PCP and have the DME actually say they got it—lots of hassle for a simple mask replacement). My first night with the nasal mask when ok. I did have some centrals in the night but they weren’t enough to totally wake me up, I just remember them happening. I was somewhat surprised to see in the results that my AHI was up to 8.5 (AI: 2.3, HI: 6.2) and noted that the machine had ramped my pressure up to 9.6 (the pressure settings were 5-12). I certainly didn’t feel too rested the next day either. The second night was worse. Again three hours into the night I was suffocating. I kept having central apnea events which would rouse me and recur every time I tried to fall asleep again. I discontinued the therapy and noted my results were AHI of 12.5 (AI:4.2, HI:8.3). I forgot to see what the pressures were.

Quite frankly I’ve gotten a bit adverse to this now. It’s an extremely unpleasant sensation like having someone putting a pillow over your face when you are sleeping. My friend suggested that my next step is to check into Adaptive-servo ventilation as I appear to mostly have central events and the use of CPAP just makes them much worse.

I do have some questions about this— exactly how much of my apnea is central and how much is obstructive? I seem to have far more hypopneas but my research seems to indicate that there isn’t any way of distinguishing them as central vs obstructive during a regular sleep study—is this true? I’ve also been reading about Complex Sleep Apnea and this seems to fit for me—though there is a little bit of contradiction about how to define it but reading the Mayo Clinic study appears to describe me pretty exactly.

So I’m hoping for some feedback—I know some here have experience with the ResMed V-PAP Adapt SV and I would love to hear about it and if any have experienced the same problems I have with the AutoPAP.

Thanks.

Welcome to the forum!

You might want to go to the following link for a current thread with someone who has what sounds like a similar problem.

viewtopic/t37199/Newcomer.html


As far as I am aware, CPAP and APAP are not typically prescribed for central apnea.

It would help if you would fill out your equipment in your profile so people who read your messages will know what equipment you have.

And, as you have discovered, DME's are not necessarily experts in equipment and you need to find a mask that works for you, whether it's full-face, nasal or nasal pillows. Also, at a pressure of 4 or 5 it's not surprising, imho, to feel like you're suffocating.

Fatigue can be due to sleep apnea or it can be due to that plus other causes. I know that adapting to treatment (with the appropriate equipment) is not always easy but you'll find here that most people eventually do make the transition and are glad they've stuck it out.

Hopefully others will stop by and give you more specific answers.

Good luck!
Mindy

Hi, I'm not familiar with your machine, but the Respironics one I use has a "ramp" feature that lets you start off the night with a very low pressure (for those who are afraid of a stronger force of air at first) and gradually have it go to your prescribed setting over about 20 mins (or less if you prefer). However, most of us don't use the ramp beyond a very few days because it's more troublesome to feel you can't breathe at all (at the start-up low pressure) than to get used to the higher set one. If that's a factor with your machine, then stop using the ramp. If it's not, then it would help if you could let us know your setting numbers, because often the techs will set a low # and a higher one (or just leave the higher one open to the default 'ceiling' - usually 20), assuming the machine will find your setting when you sleep. We've mostly found that in fact fixing the low end setting to just below (1-2 #'s) our prescribed one, and the high one to 3-5 above that, is more effective, especially as the machine will override the high setting as needed when you sleep for individual events, so you might want to talk to your techs or MD about that. As far as your having centrals (and what would appear to be no apneas), together with a lot of hypopneas (standard, especially for snorers), I can't comment, but you need to talk to your sleep doc about it as you have the wrong machine if, in fact, you really only have centrals, uncommon as that is.

I'd think that your doc is more concerned about your hyponeas than your central apneas, since you had so few. I had 5 obstructive, 6 centrals and 80-some hypopneas during my sleep study and specifically asked to the doctor which she felt was more worrisome. Of course, the duration of my centrals was not long, so that may play a role. Do you know how long your centrals lasted?

My machine pressure was originally set from 5-20 and I found 5 and 6 to be suffocating. If I were you, I'd raise my pressure to 7 and see if you feel better at that minimum pressure. It takes a while to get used to, but eventually you hardly notice the air anymore. My minimum pressure is now at 10 and sometimes I have to put my hand over the vent to make sure it's running.....

Hang in there. You'll figure out what works best for you.

Thanks all.
To answer the questions I can, I don't have the ramp feature turned on on my machine. Since my starting pressure was only 5 it was felt to be not necessary. the machine did increase the pressure as it sensed the need during the one night I was able to use it.

I don't know if suffocation is actually the most accurate description of what I'm feeling; it's more a cessation of breathing-- and because I stop breathing some alarm bells go off in my brain and I wake up so I can consciously tell myself to breath again. When I had this happen durning the titration the tech told me then that I was having centrals. I guess CPAP can trigger them and the big question is whether or not I will stop having them. The Mayo Clinic pretty much describes what I'm going through to a T:

http://www.mayoclinic.org/news2006-rst/3608.html

At the time of the study, the new adaptive-servo ventilation devices were not yet available.

Thanks for all the input!

Newcomer here...... I am going to try that suggestion of not using the ramp feature. It is set to 4. The non-ramp setting is 6. I have always started
out with the ramp on. Maybe that is why I feel like I am suffocating when using the machine.

Yes, our situations do seem similar. I had 16 apnea events in my diagnostic sleep study - 14 ca, 2 oa. However, we use different machines (which may be part of the problem).

Take a look at the post I started. Folks have given me a lot of info.

Hi again, well even if you're not using the ramp, 5(or 6) is a very low place to start out and you are more likely to feel starved for air. Can you find out your actual prescription setting number(s)?

I agree with Julie. Anything under an 8, and I absolutely feel suffocated!

Also - different masks require different minimum pressures to flush out the co2 you're expelling - with minimum pressures that low, I would think it might be possible you weren't meeting that, and some of your co2 is not getting expelled. That would be downright dangerous. I hope someone else will come along who has updated info on what those minimums might be for your masks - I don't have that information in front of me.

I don't think this is a matter of using ramp or not. I'd really like to see RestedGal, SWS, or StillAnotherGuest weigh in on this one because once you get into dealing with centrals it's a different ballgame entirely than CPAP or APAP. I don't know whether the centrals are the main issue here but they are, as I understand it, still an issue because they can be affected by CPAP or APAP. I get centrals when my pressure goes too high.

Setting a range of pressures works for some but it can also result in the machine "chasing" apneas by going to higher pressures than needed in order to attempt to clear up a central which it doesn't recognize. I think I know just enough that I wouldn't want to be advising ramp or not and how to set pressures in this case. I do think a bottom pressure of 4 or 5 can feel suffocating and the general consensus has been to use a minimum bottom pressure of 5 or 6 depending on how the individual feels.

A feeling of suffocation can also be caused by anxiety and probably other possibilities as well (e.g. if the vent holes are covered).

Mindy

I agree, Mindy-- I'm pretty sure the pressure has gone up well above my bottom setting of 5 (my rx was for 5 by the sleep doc) by the time I start having problems (they start 3 hours into the therapy) so I just don't think that I'm suffering from too much CO2 backing up in my mask or anything like that. I don’t have anxiety issues with using the masks and have always been able to fall asleep with no problem when using the therapy. I've had these same problems with both nasal pillows and the nasal mask. I tend to agree that my machine is raising my pressures when it detects the centrals and, since it cannot differentiate between OSA and CSA it's, as you put it, "chasing the centrals". I did read the other postings about this and definitely think that the adaptive servo ventilation is my next try. Reading up on the Complex sleep apnea seems to fit for me. This informational brochure is helpful too:

http://www.resmed.com/en-au/clinicians/ ... 011213.pdf

The algorithms seem to be pretty well tailored to the combination of OSA and CSA.

Also, as I'd mentioned in my first post, I do have some other neurological issues going on including a dysfunctioning autonomic nervous system. It stands to reason that since CSA is a neurological problem that I would be having issues here. I also think that I have OSA as well as my hypopneas seemed to diminish between my two studies-- though I'm uncertain as to how to differentiate between central vs obstructive hypopnea. Can anyone enlighten me as to whether or not polysonography does differentiate? The study just splits the different events into central, obstructive, and hypopneas-- why aren't the hypopneas categorized as to what is causing them?

mcaimless wrote:I Can anyone enlighten me as to whether or not polysonography does differentiate? The study just splits the different events into central, obstructive, and hypopneas-- why aren't the hypopneas categorized as to what is causing them?

HI,

Polysomnography can differentiate between obstructive and central apneas (I had 1 central near the beginning of the study - apparently not uncommon and not concerning). I'm not so sure that any test can differentiate perfectly. My APAP (Sandman) will log centrals but I read somewhere (on this forum??) that it can only differentiate well about 60% of time time. One of the things it looks for is whether it can hear cardiac oscillations - if it can "hear" them, then it knows that the airway isn't collapsed and so it's not an obstructive apnea. However, it cannot always "hear" the oscillations even when the airway isn't collapsed. I would expect that polysomnography equipment can differentiate better but it's unlikely that it's perfect.

I'm not sure about why hypopneas aren't categorized. My software shows both obstructive and central apneas.

Mindy

PS If you really want to find out more about central apneas and hypopneas, I'd post a question with a title indicating that because then you're more likely to hear from the folks who know a lot about that.

Mindy