Not new to CPAP; mixed apnea and desperate for correct equip

[aspen]

Ugh. So as I suspected, sleep specialist is out. He says he ethically can't prescribe a different machine because my ahi is too low. No sleep, not his problem obviously.

I spoke to tech people at both Respironics and Resmed. The only Resmed that offers a timed return of pressure after EPR is the Resmed AirCurve VAuto. Respironics suggested a auto bipap. I will get approval for neither.

My choices:

1. Buy the Dream Station because it is the best of two not completely great options. IF it gets approved. There's still the possibility that it won't. So even this scenario involves finding a new sleep doc.

2. Return both machines (turns out they need the DS back by next week) and go back to using my CPAP machine, get completely sleep deprived again, and request a referral with a new sleep doctor which will hopefully happen before I'm in pieces again. I did some research and found a sleep clinic about three hours away that specializes in neurological conditions. there's also a regular clinic about 1.5 hours away that seems willing to take me.

This is pretty discouraging

[aspen]

Back on CPAP. No surprise, I'm down to 4-5 fragmented hours per night. My range on the APAPs was 10.5 - 16 (Resmed), 11-16 (Dream Station). I had to set the CPAP at 10.5 because anything higher makes my chest hurt and keeps me awake . My AHI improves each night as I get less and less sleep ... Superwoman has left the building.

CPAP company suggested an urgent referral to a neuro sleep clinic; I added an urgent referral in to another regular sleep clinic thinking it would be faster.

Unbelievably, I've heard from the neuro clinic already. They requested a compliance download. I contacted my CPAP company and (I can't believe this) they suggested I send the compiled SleepyHead data rather than a download from their office. Their reasoning .. I have all 3.5+ years of data now in SleepyHead. They never downloaded it all, just chunks here and there. Then my SD card self destructed, so they can't do a full download.

I'm pretty impressed with the SH overview reports. A clear picture of each phase of my sleep mess. Also weird, when I first got CPAP I kept getting the okay from the company. My AHI ran over 10 for the first four months. At that point I could sleep through it, so I was blissfully unaware.

I attached a note before gps receptionist sent it off to Toronto today, apologizing for using open source software and explaining the situation. I can't imagine that they will accept it. We'll see. If not, my CPAP company will have their work cut out for them. Has anyone else used SleepyHead to support their bid for a new study/machine?

Plus I'm doing a provincial sleep health research project (ironic) and my contact with the study recommended who I should see at the neuro sleep clinic, so gps office added that info, and I've already heard that they have switched the referral to the head honchos.

So frustrated to be to be entering serious sleep debt once again ...

[aspen]

I can not begin to tell you how wonderful it is to sleep 7-7.5 hours a night again, pretty much like I used to.

Thank you to some wonderful, generous people at this board, and some international transportation from IRL friends, I am the proud owner of a retro Respironics Auto BiPAP with biflex.

This machine has saved my sanity. Possibly my life (I know that sounds overly dramatic, but the sleep deprivation for 18 months was disabling).

What I've learned about my situation since I've had this machine?

My severe REM sleep apnea hasn't changed, but I can sleep through it. Presumably because, with the biPAP, the pressure only has to increase from the low inhalation pressure vs from exhalation relief pressures. My sleepyhead graphs look completely different and I don't wake up while the pressure is still increasing.

Part of my issue is neuromuscular. I have right side upper airway weakness. I finally realized that almost every time I had a sudden wake, I was on my left side. yes, the normal population has worse apnea on their back, but not me. With other health conditions floating around, you have to be open minded. So the increased relaxation of REM sleep meant half my airway collapsed even more. Since the APAP worked to some extent, I'm guessing it took care of the apnea on my back, but couldn't deal with what happened when I rolled on my side. With APAP I was awake 3-4 times a night. Back to CPAP I was awake 7-10 times a night.

My AHI numbers are good, but from 2x-4x the numbers I had with CPAP and APAP. Since I'm actually asleep .

The central apneas, I don't believe were real, but the product of repeated arousals. They in fact weren't waking me up, as I thought, but it was the lack of splinting of my airway above. This was suggested here, by wonderfully smart people, by my XPAP company, and also by the RT at Respironics who spoke to me at length and recommended the machine that currently sits beside my bed.

I still have a referral to a neuro sleep clinic because I still need to pursue getting a prescription for this machine. It won't last forever. I'm also having some trouble with humidification, but getting that sorted. In the meantime I have returned to land of the living, thanks to wonderful folks from this forum.

I will be paying it forward, for sure !

[Pugsy]

You might add your machine to the comments section of your equipment profile.
The links are broken to those discontinued machines.
This would be what to add
PR S1 BiPap Auto #750...
then we would all know which machine is being used now.

Congratulations. Nothing like getting decent sleep to make a huge difference in so many things.

[aspen]

You might add your machine to the comments section of your equipment profile.
The links are broken to those discontinued machines.
This would be what to add
PR S1 BiPap Auto #750...
then we would all know which machine is being used now.

Congratulations. Nothing like getting decent sleep to make a huge difference in so many things.

YES! That.

I thought I added something but I guess not? I'll try again .

[Pugsy]

Make sure to click "submit" after adding it to the comments section. Changes to the profile or comments section won't stick if you don't click on submit to finalize things.

[aspen]

At diagnosis I had sleep onset centrals. Keep in mind I have a relapsing and remitting issue.

At this point, the centrals weren't ... central. Sporadic, and as was suggested previously here, likely due to all the REM associated wakings. They may happen in the future but I'll deal with that then. This machine may not support use of opiate painkillers, but i pretty much refuse those anyway.

I trialed TWO APAP machines. I possibly could have purchased one of them, but neither worked "that" well. Better than CPAP, but they didn't address the severe REM sleep apnea quickly enough. Bit less waking throughout the night than CPAP, but still fragmented. Plus there was a still a good chance they wouldn't have been approved based on my AHI and downloads.

It didn't seem worth the effort to fight the system to for a machine that a Respironics RT had already deemed insufficient to splint my airway.

This one? Worth the effort.

======

the OP said you had mixed apnea

in usa the only FDA approved treatment is an ASV

that the ASV is the only one that works is well known
insurance keeps saying try an xpap until you prove it fails
by dying after 3 months of no sleep and we might consider providing the ASV

this is all about cost and not treatment and they dont care about your QOL

if you had a machine that worked
i would not let them have it back until they pry it from my cold dead hands

[aspen]

Update:

21 months later, and I finally have a legitimate prescription machine, not covered by ADP in Ontario, but fully paid for by my extended health benefits. This has been a long tough journey of learning to advocate for myself. I listened to specialists who told me, no ADP, no way private insurance would cover it (I wake up rather than pulse ox dropping below 92% - so was not taken seriously). Without this group, I wouldn't have had the knowledge, or the SLEEP - thank you to the generous benefactor who most literally saved my life from this group -- to keep pursuing help within the system.

If I wasn't so busy with work, I don't know what I would do with my spare time now!

It's a Resmed 10 VAUTO .. I've always had respironics bu (CPAP, trialed APAP, System One bipap then DS), but although the Resmed APAP was a nightmare (centrals inducing), the bipap algorithm is perfection. For me.

I had to purchase an emergency Dream Station (bipap) while in the US (posted here at the time) -- although it was good, my sleep was still not really good .. many wakes/arousals.

I'm blown away by how truly different the algorithms are. It pays to trial more than one companies' machines, for sure. First night last night - I'm tired today because I had so much deep sleep prior to 4 am I just woke up, body screaming - hey, well done! I couldn't get deep sleep with the DS.

Again, thank you to all the truly great people here who helped me get to this spot <3. Pugsy, I picture you wearing a cape. Thank you!