Just a quick update on my situation. Please, catch up first by going to my original post "Central Apnea Emerging"... https://myapnea.org/forum/ahi-turning-into-ca. Reading most of it will catch yo up on the details of my situation and likely answer any questions for you/provide more specifics.
wiredgeorge and sleeptech, thanks for weighing in so much. And, sleeptech, one of the two factors in my new found success is based on your EPR advice. I stuck with no EPR and started to get much better results. I was consistently down to an AHI between 5-8 for weeks - still mostly Centrals. Here's the bigger discovery...
A few weeks ago my humidifier ran out of water and I registered my best night ever. Instead of filling it the next night, I opted to try a dry night again to see if it could make a difference. I've yet to fill it again. My AHI has been under 3 consistently. I'm having nights where I'm only at .9. My 107 day average AHI has plummeted from 8+ to 4.66 in only a few weeks. I'm leaving well enough alone for now but I'm wondering if I can even turn my pressure down from 9.4.
I'm still tired waking up. I don't feel totally refreshed, though as the day rolls on I have all the energy I need to do my thing. I'm guessing after a few months of an AHI under 5, I'm really going to notice a difference.
So, for those of you struggling as I did (please, read the conversation in the Central Apnea Emerging post I made), there IS hope. Self titrating became the path for me. I hate to say it, but my sleep docs were simply unhelpful (I've had 3). It took months of dealing with Central Apnea (and the anxiety that goes with it) before I was able to make these two critical moves that changed everything. 1. No EPR except for the low setting on Ramp when I go to bed (I likely don't need that even now but I'm not messing with anything while the results are good). 2. No humidifier. These may not be the answers for everybody, but if you're struggling in the same way I was, it's worth a shot.
It's taken me nearly 5 months to get to this point! The previous 5 months were really rugged. So when they say it can take a few months to normalize on treatment, just know, it CAN take way longer, but you CAN get there!
A couple of other things I'm doing: Since January 4th, 75% of my diet has been plant based. I walk 3-5 miles everyday. I've lost 27lbs - from 208 to 181 (I'm 5'7"). It could very well be that the improved sleep is also helping me lose weight. Now I'm just hopeful for a morning in which I wake up feeling totally refreshed. Maybe that's just not possible for me, but I'm definitely feeling hopeful. You can get there too!
Hey, all. Maybe I’m being over cautious, but is anyone familiar with myapnea.org being associated with any focus groups? I received an invitation to one but need to “download or click the securedoc.html attachment” in order to read it. I generally don’t like to click on unexpected links with names I’ve not heard of so figured I’d ask. Thanks!
Thanks so much for this. It's been a particularly tough couple weeks; it's very helpful to talk this through with someone experienced on the matter.
Yes, indeed, there was evidence of CA in the study. My doctor had seen evidence of it, which is why he ordered the study. I had expected with this confirmation that he would consider that enough evidence. Alas, here I am. :/
I had wondered about the EPR, so I'm very glad you brought it up. I turned it off the other night and had a pretty rough go of it since I'm not used to it. It looked as you see on the attached. The next night, I changed the EPR to 2 and last night to 1. I had slightly better results each night (6.81 and 6.4 respectively). My mouth is opening a lot more during sleep (which means drool in the mask that I have to ignore) and I'm kind of uncomfortable when I wake up but manage to get back to sleep.
I think I'm going to go back to my originally prescribed pressure of 8cm and only use EPR on ramp to see how that goes. Wish me luck!
Ok, sleeptech and wiregeorge (and anyone else who's kind enough to weigh in)...
I met with my doc yesterday following last week's sleep study. As expected, I didn't get a good night of sleep and it was hard to tell if the study yielded clear info on how to move forward. He's going to continue me on the CPAP for now. The sleep tech at the lab was convinced I'd be moving to a Bi-PAP. The plan is to do constant pressure at 12cm and increase if needed. If the Central events continue, he wants to go to advanced modality therapy that is a bi-level with a backup rate structure. It's clear to me that docs basically guess and check. Meanwhile, I'm trying to pull myself together to feel normal on the day to day.
I picked up an SD Card and installed SleepyHead. Last night's data is attached here. I'm trying to wrap my head around it; any thoughts/tips are welcomed. I had much better sleep that last few nights at 10.2cm, but I'm trusting his judgment. I can provide some historic data but apparently the SD needs to be in the CPAP overnight to populate the waveform data (I'm guessing, since it's not there for previous nights. My plan is to stay at 12cm for a few nights and then increase by .2 - .4cm (up to 15cm) every couple nights until I find a sweet spot.
I'm determined to get this figured out and am really hoping these Central events subside.
That was my intuition. I’m glad to read you feel the same.
I had my sleep study last night. I barely slept. I’m wondering how reliable the data they collected is. The tech seemed to think I need a Bi-PAP. Problem is, I kept waking up when he’d kick it on. He’d have to shut it off temporarily (put it back to CPAP mode) for me to fall back to sleep. I’m not looking forward to getting used to a new machine.
My sentiments exactly on the shirt.
I’ve been using the Simplus full face mask and mostly don’t have a problem sleeping on my side. I may give the nasal pillows a try now that I’m used to the CPAP at large, though, I tend to open my mouth and would just have to use a chin strap anyway. Once I know if they’re going to switch me to a BiPap I’ll figure that stuff out.
Haha. Indeed, wiredgeorge. My doc was trying to give me a more affordable next step since my co-insurance would have left me with $600 out of pocket for another study (which is a problem I’ve since remedied, allowing me to afford the study). The shirt just seems like a silly waste of money. I don’t sleep on my back much. My clinic suggests I do more than I think, which is possibly true, but I doubt it’s even 20% of the night. All I do is toss from one side to the other all night. I’ve slept like that for years.
Here’s a link to the shirt! https://www.antisnoreshirt.com/Rematee_AntiSnore_T_Shirt_p/ts.htm