Help with OA Cluster

TyroneShoes wrote:I still feel that on a different day, were you to go back and actually read my earlier posts here, that your responses might be completely different. But then maybe that's just me trying to put you up on that pedestal again. Or simply wishful thinking.

I didn't have a bad night....I actually had quite a decent night. Make no mistake about that.

I will probably still read your posts (I read almost all new posts daily from everyone even if I don't comment) most likely but I probably won't respond much, if at all, because I think we (or at least on my side of things) have a personality conflict and thus it is probably best if I just don't say much. I learned a long time ago that I can't help everyone for any number of reasons. Sometimes my way of explaining things simply isn't sufficient for some people but I know no other way to do it. That's when I bow out and let someone else try. I think it is best if I bow out when it comes to you and I will defer to others to maybe explain things better for you. It's obvious that I can't understand your questions and thus I can't help you.

And please keep me off the pedestal...I never asked to be put up there and I really don't want to be there anyway.

And with this last comment to you....no more of this sort of stuff in this thread will I be doing.
This thread is about Macpage's issues...not yours nor mine with each other. Please...just let it go.

Pugsy wrote:I am so sorry you had a bad night last night. I have always said the mind is a powerful drug..and sometimes it's power doesn't work in our favor.
Do what you can to lessen the anxiety as best you can. I imagine that this is not the first time you have been down this road.

Yes, I really don't know what's causing it. I think those clusters are taking a toll. I really started going downhill after a week of feeling pretty good and uping my activity level. It seems I sleep a little better and things change. I guess it's common for newbies to have to adjust after starting to get a little more normal sleep. I'm also coming off PPI medication that's been keeping stomach inflammation at bay this year so maybe the stomachs not liking the rebound. I lost 45 pounds earlier in the year and was way under weight but as I felt better I've put a healthy 25 back on and am at ideal weight. I guess that alone might require pressure change, but I doubt my therapy has ever been really optimized. Stomach or apena causing the poor sleep, anxiety, and ill feeling weird symptoms. That's the question. I'm sure it was the apnea that caused the stomach/GI.

Best,

Mike

Mike,

I have really hesitated to comment on this, but a few years ago I was having a terrible problem with clusters. Typically about 90 minutes into my sleep. We are talking about 10 OA events in a row that ranged from 20-30 seconds up to 70-80 seconds. I think in one 15 minute span I wasn't breathing for 11 minutes or so, Hardly a poster child for CPAP therapy. I can only run straight CPAP and the more pressure I added the worse the clusters became. I never had aerophagia except a little at 17cm.

For me, I was much better at 13cm than 17cm. The events were worse with added pressure. Also, for me again, EPR was the kiss of death. Have you considered not using EPR at all? My experience is that a 3cm EPR was essentially reducing my pressure by 3cm as I believe, for me, OA problems also occurred on exhale. If the inhale pressure is causing your aerophagia and the exhale pressure too low to stop OA events, it could be a bad combination.

Since your pressure looks somewhat consistent after your cluster you may not gain or lose anything from a straight CPAP and no fluctuations (ramping in pressure). You may end up better off running a straight 11.4cm without EPR and you might be able to run lower if the EPR is causing your clusters to begin.

I think that what worked for me was finding that sweet spot where I had the right setup of pillow height, position, and the right pressure. Until I lost a lot of weight I ran my pressure for a year between 12.4 and 12.6. Too little was bad as well as too much.

This is a journey but you just have to stay on top of it. Make a few little changes and look at the data, a few more tweaks and see how it goes.

John

70sSanO wrote:Mike,

I have really hesitated to comment on this, but a few years ago I was having a terrible problem with clusters. Typically about 90 minutes into my sleep. We are talking about 10 OA events in a row that ranged from 20-30 seconds up to 70-80 seconds. I think in one 15 minute span I wasn't breathing for 11 minutes or so, Hardly a poster child for CPAP therapy. I can only run straight CPAP and the more pressure I added the worse the clusters became. I never had aerophagia except a little at 17cm.

For me, I was much better at 13cm than 17cm. The events were worse with added pressure. Also, for me again, EPR was the kiss of death. Have you considered not using EPR at all? My experience is that a 3cm EPR was essentially reducing my pressure by 3cm as I believe, for me, OA problems also occurred on exhale. If the inhale pressure is causing your aerophagia and the exhale pressure too low to stop OA events, it could be a bad combination.

Since your pressure looks somewhat consistent after your cluster you may not gain or lose anything from a straight CPAP and no fluctuations (ramping in pressure). You may end up better off running a straight 11.4cm without EPR and you might be able to run lower if the EPR is causing your clusters to begin.

I think that what worked for me was finding that sweet spot where I had the right setup of pillow height, position, and the right pressure. Until I lost a lot of weight I ran my pressure for a year between 12.4 and 12.6. Too little was bad as well as too much.

This is a journey but you just have to stay on top of it. Make a few little changes and look at the data, a few more tweaks and see how it goes.

John

I'm really glad you commented. Your numbers look really good, and I see a cervical collar? I've thought about that as well as it seems I have a lot of jaw drop, mouth open in these clusters. When I have woke up around these times, I find my lower lip sometimes breaks the seal on my FFM by escaping below the seal. Snoring, leaks, etc.

I will take a look at the EPR as you suggest while bumping up the Ipap minimum as well. I'm tempted to do lots at once, but I know you guys rightly suggest one step at a time. A narrow range or fixed as you note may work. I'm willing to try it all. It's the only way to get it right and feel better.

How did you feel during these clusters? Was it awful? I just hate the idea of the time it's going to take to work through it all. I really want a life, even if just a little.

Thanks,

Mike

I can't say I felt awful because I was exercising quite a bit and even the less than Ideal therapy is better than no therapy so I never got foggy. I recall the cluster would wake me up at times. But I didn't feel foggy in the morning.

That said, when my numbers are out of whack, I don't feel as good as when they are good... whether that is the power of suggestion or not. The real barometer is how early and easily it is for me to get out of bed on the weekends.

John