!!CENTRALS!! Probs w/my bilevel

[allinknots]

Hi, everyone! It's been awhile since I've posted, and awhile since I've used pap therapy!

If you read some of my former posts, you'll see that I have a quirk: I have an aversion to air blowing at me. (If you are Freud-inclined,) we can trace this back to childhood roots. My mother always cautioned us to make sure we were not in the direct path of air blowing from a fan, or we might become "chilled" due to the draft. To this day, I am extremely uncomfortable and distracted if a ceiling fan is overhead and circulating air in my direction. So adapting to pap therapy has been an issue for me!!

True confession time: I became so frustrated that I actually gave up pap therapy several months ago. But I've paid the price: my sleep and rest have suffered!!!!! So I'm back on the pap-wagon again!

I began my pap therapy with a Resmed S8 apap. I developed a problem with exhaling against the pressure, so my doc rx'd the Resmed S9 Bilevel. That was working out pretty well, until another issue popped up: I was dx'd with a connective tissue disorder which causes pain. I've been rx'd some pain medication which makes me more comfortable, and reduces the pain so I can sleep. Unfortunately, these medications have a side-effect of reduced respiration. *I cannot take a med that doesn't have that side effect for other reasons--g.i. issues, ineffectiveness, etc. So even though the first idea to solve my problem might be, "Can you switch to a medicine that does not cause reduced respiration?", please do not suggest that as I have already explored and exhausted that option. Also, I'm taking a very low dosage of the med, so reducing the dosage is not an option, either.*

I'm getting ahead of myself here. OK, here's the problem. Since the med I need to take causes reduced respiration, the machine registers that as a central apnea. My breathing becomes shallow and my breathing rate decreases. It is not due to obstruction--it's due to the med.

My dr. felt that an Adapt SV (Resmed) machine was indicated, and I tried that machine for awhile, but was not able to sleep. Any time I had a central/i.e. reduced respiration event, the machine would blow air and wake me up. I felt that I was being suffocated with air! Then it would take me a little while to fall back asleep. This happened often during the night, and I just never adjusted to the machine. I know this machine is a salvation to many people, but it just would not work for me!! I ended up being more exhausted the next day than had I not used *any* pap therapy, so I ended up going back to the bilevel machine.

I became discouraged and thought that since the bilevel didn't work on centrals anyways, I would just try going papless for awhile. That logic was probably not the best, because now not only were my centrals not being addressed, but my obstructives weren't either. I sort of justified this vacation from pap because I lost a little weight, and thought that that fact probably reduced my obstructives anyways. But I ended up being tired most of the time, so I decided that some type of therapy was probably better than no therapy.

Now I'm back to the frustrated stage again. It takes me awhile to get to sleep with the bilevel machine, just due to the "air is blowing at me, keeping me awake" issue. (I do eventually fall asleep.) I check the report the next morning though, and my ahi is high! Prior to the meds, I was often able to get my ahi to be less than 5 events per night. Now it registers between 20 and 65. I'm positive this is related to the centrals-due-to-meds. ARGGHHhhhh!

I'm stuck between a rock and a hard place. The rock: Adapt Sv machine--constantly interrupted sleep, exhausted the next day, but low ahi. The hard place: Bilevel, somewhat interrupted sleep, increased energy the next day usually (yet sometimes tired the next day) but crazy-high AHI.

Resp, Therapist (pretty helpful, good relationship with her) at DME says that maybe an S/T machine would be easier for me to adapt to (compared to the Adapt SV which I returned to the DME). I haven't tried the S/T machine yet, and I'm a bit reluctant to. Insurance and I bought the Bilevel, it's totally paid for--and I'm not sure that insurance would want to get the ball rolling again with yet another machine.

Thank you for reading my post and pondering my dilemma! What suggestions do you have? (Plz remember, "Stop the meds; change the meds; reduce the dosage" are not viable options! )

Warmly,

All in Knots

(edited due to typo)

[Pugsy]

How about adding "centrals" to your subject line to get the attention of the forum members who have lots of experience with them and the type of machines you are talking about.
So..maybe "Probs w/my bilevel & Centrals"

[allinknots]

Pugsy, awesome title suggestion!

Thanks,
All in Knots

[DoriC]

It might be helpful to know your pressure settings, Pressure Support. Are you on Auto or straight bilevel? Have you had a recent sleep study? Your situation is complicated but hopefully you'll get some help from our "pros".

[allinknots]

My most recent sleep study was about 6 months ago. I am on auto bipap, and the pressure is set between 4 and 15 I think. I begin breathing very shallow, and re-set the parameters to begin at 4cm, but I think the original rx was 7. 7 is just too forceful for me to begin with, and would cause me to feel the "air is blowing too strongly" feeling, interfering with sleep onset. But my pressure usually tops out (with auto setting) at about 9.4, yet registers many ahi's (due to centrals).

I do have another follow-up with my sleep dr. in 3 weeks, but was looking for suggestions from board members as well!

Thx,
All in Knots

[RogerSC]

Have you given any thought to using a mask with nasal pillows? All the air is internal to your nose, so maybe you wouldn't feel like air is being blown at you? Might make a world of difference, or maybe you've already tried it *smile*.

Another thing that you might try is a sleep aid, like Ambien, that would help you get to sleep and stay asleep with CPAP going.

Just a couple of odd thoughts...good luck to you.

[robysue]

allinknots,

First---I understand exactly what you mean by your aversion to air blowing at you. I share it---even after almost 3 years of PAPing. I can tell you that if you stick with PAP long enough, you'll eventually get to where your normal starting pressure won't seem quite so intimidating. I still don't like the sensation of air blowing down my throat, but it no longer triggers the intense discomfort and (in my case) intense anxiety that I had to deal with my first 6-9 months of PAPing.

Second---you say that you're on a med that triggers reduced respiration and that this has triggered a (drastic) increase in machine scored AHI. Are you able to use Resmed or SleepyHead to look at the nightly data? If so, can you give us an idea of what the breakdown is between OAs, CAs, and Hs on a typical night? Do the CAs occur all night long?

Next: Since the VPAP Auto doesn't increase pressure in response to CAs, have you looked at what is causing the pressure increases up to 9.4? On the VPAP (NOT the Adapt SV), do you wake up frequently during the night with the air flow bothering you? Or the pressure bothering you? Or with the VPAP are you sleeping more or less through the night with few or no wakes?

And finally: How are you actually feeling independent of those high AHIs that are driven up by the medicine-induced reduced respiration? And would it be worth having another titration study done with the new medicine in your system so that the actual severity the "medicine-caused centrals" could really be established in a lab with a tech who can distinguish between real CAs and things that the VPAP might score as a CA, but on a PSG are not scored as a CA for any one of a number of possible reasons?

[DoriC]

My most recent sleep study was about 6 months ago. I am on auto bipap, and the pressure is set between 4 and 15 I think. I begin breathing very shallow, and re-set the parameters to begin at 4cm, but I think the original rx was 7. 7 is just too forceful for me to begin with, and would cause me to feel the "air is blowing too strongly" feeling, interfering with sleep onset. But my pressure usually tops out (with auto setting) at about 9.4, yet registers many ahi's (due to centrals).

I do have another follow-up with my sleep dr. in 3 weeks, but was looking for suggestions from board members as well!

Thx,
All in Knots

Just wondering what your PS(Pressure Support) is set at? Most people use 3 or 4(the comfort difference between Epap and Ipap) so with your settings your Epap(exhale) would be 4cms and your Ipap(Inhale) would be 7 or 8 which are very low settings. If your pressure is maxing out at 9.4 then you probably would need your higher Rx of 7cms for Epap and 10 or 11 for Ipap. Is it possible that you haven't set a limit for your PS? I'm not sure if that has anything to do with causing centrals but it was just a thought because any discomfort that causes my husband to be restless or causes arousals increases his CAs.

[JohnBFisher]

Unfortunately, ASV is the gold standard for treating central sleep apneas. There are tricks that allow you to adjust to the therapy. But most of it is just that it takes time for your body to adjust. It's not an "instant on" therapy. Instead you and your body need to adjust to it. Once adjusted it will greatly improve your sleep. Other therapies have consistently been shown to be much less effective and/or more invasive.

You might need to consider taking the time to adjust to the therapy.