Uncle Flappy's Journey

Good point. I would like to try another night with CPAP 8 to see if the results are consistent with what we saw before. Sounds like we need to establish a baseline.

Well, here is last night's data at CPAP 8. Looks a lot like Bi-level data so no silver bullet with straight CPAP mode. I recall waking around 3 times including at around 3:45 but could not fall back asleep. I start to doze and then abruptly wake and change positions - probably from the cluster of centrals. I do think there is something to the theory of transitional events.

Going to try again to reach the sleep study doc today.

In reflecting on these trials and tribulations during my commute to the office, I came to the realization that I am doing this all wrong. As a type A personality (and a male), I am trying to control my outcomes and "fix" the problem when what I really need right now is to embrace my therapy. I think some of the CAs could be occurring due to outside influences - like the uncomfortable fit of the mask, leaks, new sleeping positions to avoid leaks, and concerns about how gale force winds from the mask vent will negatively impact my wife. Bottom line: I'm not comfortable so how can I get good sleep? I am going to take a step back, ignore the data, and focus more on getting some rest.

I still plan on contacting my PCP for referral to a cardiologist and I will call the sleep doctor for his take and to request an auto bi-level machine in hopes that dorking around with pressure settings will be less of an issue.

Pugsy, thanks for all your help. For now, I am reverting back to the 10/5 as prescribed. It is definitely not ideal and not (fully) treating my apnea but it is probably as good of a place as any to get comfortable enough for a full night's sleep.

I totally understand your decision and actually agree with you.
Gotta get the sleep first to be able to evaluate it.
Do keep your doctor in the loop though. You are going to most likely be someone who needs closer watching.
You are special. I think the UPPP probably helped you be "special". Almost every UPPP person here that I know of has had a difficult time finding a good pressure to use.

Hard for me to stay away from this forum although this time I am not posting about me - at least not directly. Just want to do a shout out to Karen as I received my Pad A Cheek mask liner today. I ordered it on Friday and was surprised it arrived so quickly especially given that yesterday was a holiday. I briefly tried it out and it was wayyy more comfortable than those Remzzzzs. In my short side-sleeper test, no leaks. Thanks, Karen!

- Flappy

Just got a call back from the sleep doc. We had about a 15 minute exchange, me loaded with questions from things I learned here. In fact, he said I am very knowledgeable asked what I do for a living.
Although he did not come out and say it, I could tell he was annoyed that I had been changing the pressure settings. "This is a process," he said, "and we need to establish a baseline." He went on to say that in my initial sleep study, at least a third of the events were CA; therefore, he does not want to change the pressure as it will likely exacerbate clear airway events. "Part of the process," he went on to explain, "is to rule out CPAP and BPAP as potential solutions before moving to ASV."

He thought it a good idea for me to have an EKG but expects results to be normal. I have a face to face appointment scheduled with him in March and will soon be getting a call from the sleep lab about scheduling an ASV titration study. That study may or may not occur prior to the consultation. In the meantime, I am to continue with the BPAP at 10/5 to build that baseline and further get accustomed to therapy. I am not to change the settings.

I read about ASV machines but do they "feel" different? BPAP and CPAP definitely feel different and even last night I got a little uncomfortable with the breathing pattern, specifically when my inhalation duration lasted longer than the higher pressure provided by IPAP. Anything I should expect from ASV? Pulse of air during the CAs?

In regards to the EKG, I am hoping to hear from my PCP this afternoon.

- Flappy

Got a call from the sleep lab. They had a cancellation and wanted me to come in tonight! Can't do it as I need to be home with the kiddos while my wife works (someone has to pay my medical bills ). ASV titration is scheduled for February 7.

Finally got some decent uninterrupted sleep. A new record at 7.5 hours. I even overslept as I forgot to set my alarm and was late for work. That hasn't happened in a looonnng time.
I attribute the longer session due to adjusting the Bi-Flex setting from 3 to 2. I found it much more comfortable. Expectedly, the numbers are still terrible - OA idex at 15; CAs at 10. Also a little periodic breathing. Not sure if that really means anything at this point.

Called my PCP again and the EKG referral is being processed. I should hear back later today.

- Flappy

Uncle Flapp wrote: Finally got some decent uninterrupted sleep. A new record at 7.5 hours. I even overslept as I forgot to set my alarm and was late for work. That hasn't happened in a looonnng time.
I attribute the longer session due to adjusting the Bi-Flex setting from 3 to 2. I found it much more comfortable. Expectedly, the numbers are still terrible - OA idex at 15; CAs at 10. Also a little periodic breathing.

Finally a longer block of sleep..yeah
Too bad you couldn't do the ASV titration but the 7th will come around pretty soon. It's what you are likely needing.
Glad to see it in the works.
BTW I have been using a ASV type of machine for couple of weeks now. People do use them that don't have issues with centrals...just not many of us will try them because of the cost involved. Some people, like me, just like to try everything possible just for grins.

Anyway, it was an easy adjustment for me. Walk in the park for me but don't feel disheartened if it takes a bit of adjustment for your body to get in sync with the machine doing it's thing with your centrals.

Pugsy wrote:Too bad you couldn't do the ASV titration but the 7th will come around pretty soon. It's what you are likely needing.

To be honest, I am glad to have a bit more time just to further get used to therapy. I still have my bad days - last night I found myself fighting the machine and it was difficult to remain compliant. I got very little sleep.
What I don't want is to be anxious or feel claustrophobic during the titration. My last one was brutal - Hoping I can rest enough to provide viable data and maximize the chance prescribed settings will be correct.

Well, tomorrow is the titration study and soon the move from BPAP to ASV. I have had some good nights but mostly bad ones and tonight is one of the latter. No problem getting comfortable but as soon as I start to drift off, in march the OAs and CAs. My sleep latency is good - only around 6 minutes but as I transition into sleep, I'll stop breathing for 50+ seconds (according to SleepyHead) and abruptly wake with a wave of anxiety as I fight for air and try to re-calibrate my breathing with the rhythm of the machine. Four attempts at sleep tonight have been unsuccessful so here I sit at the computer before trying for a fifth.

I had hoped that by now I would be more accustomed to therapy and maybe in some ways I am but the transition to sleep is still a very difficult one. I want tomorrow's titration to go well. The previous two were tortuous and I would like to be able to sleep through most of it. That would be a win-win: they get good data and time goes by quickly. The optimist in me says tonight's difficulty is a blessing because I am bound to be exhausted at time of the study; the inner pessimist believes tonight's difficulties are a predecessor to tomorrow's and I will be even more miserable.

Sorry for bellyaching but it helped me feel a tiny bit better.

Good night. Sleep tight.

- Flappy

Sorry to hear you are having a hard time with the transition to sleep. Trust me, I #KNOW# how you feel. As a result, I will caution you that once you have an ASV unit, it can take several months to adjust to the therapy. I now completely trust that my machine will catch me as I fall asleep. But that literally took three or four months to reach that point. Good luck with the sleep study.

By the way, once you get top sleep, you will find you sleep much better. But getting there takes adjustment.

JohnBFisher wrote: I will caution you that once you have an ASV unit, it can take several months to adjust to the therapy.

John, Thanks for your response and insight. What was your biggest adjustment? Was it the forced breath or regulating your breathing with the machine?

I am considering taking 1mg of Lorazepam (Ativan) just prior to the titration study in an effort to help control any anxiety and to help me sleep. Would doing so change the outcome of the testing? I freaked out last couple of times and didn't sleep much. Even with an aggressive tech, I had a hard time being compliant.

Thanks for your input.

- Flappy

I would use the medication. It won't make a great deal of difference in the titration.

Two big barriers to overcome were .. (1) Learning to trust that the machine would breathe for me and I did not need to panic when I stopped breathing. And (2) adjust to the pressure increases as I fall asleep. With an ASV unit the pressure bounces all over the place. That causes lots of leaks scabs takes a long time to adjust to that.

I warn folks it takes three months or so to adjust. This seems to be especially true if you have problems with falling asleep.

Hope that helps.

JohnBFisher wrote:Hope that helps.

Understanding what to expect always helps. I greatly appreciate your input, thank you.