New APAP user. High central apneas.....Canada user

Ok, tonight I will do pressure of 7 (so high 7 and low 7?) And no epr. I wish I could make my dr help me sooner. Thanks again.

Needsleep54321 wrote: ↑

Sun Jan 31, 2021 10:09 am

Ok, tonight I will do pressure of 7 (so high 7 and low 7?) And no epr. I wish I could make my dr help me sooner. Thanks again.

Yes..setting minimum and maximum to 7 effectively makes it a fixed pressure.

Also wear the pulse oximeter tonight and see what happens with the O2 during the night.

Will do

Last night I tried pressure 7/7 with no EPR. No improvement with centrals. I only managed 45minutes. I hope that today I can be put on a cancelation list for my sleep dr. Thank you and I will post updates.

I now have a bipap machine. Philips dreamstation auto bipap. I am still having a lot of central apneas. The settings are shown on the oscar screenshot. My resp therapist is dragging his feet about getting me a machine with a backup rate to help me breathe. He says he wants to "check all the boxes" before moving to another machine. I've pleaded with him that I am sick all the time and need to be able to sleep. He wants me to give the bipap more time. Is it likely that with this many centrals, I will adapt to this machine over time? In my province, you can't just get an ASV or backup rate machine. You must get funding approved to go into a ventilator equipment pool. I'm worried this whole process will take time that I don't have.

Needsleep54321 wrote: ↑

Sat Feb 06, 2021 8:39 am

Is it likely that with this many centrals, I will adapt to this machine over time?

No. Extremely unlikely.

Idk why my dr is making me wait. This is torture. On friday I begged him to give me a machine I can breathe with so I can finally sleep. He wants to keep trying other things, adjusting settings, etc. I'm so upset. Next week I will ask again. How long can I last like this? He doesn't seem to have any urgency. Sorry for the rant.

Are you worse with cpap or without?

We had a forum member selling his slightly used Respironics ASV for 125 bucks plus shipping not long ago but I think it may have been sold by now as I saw someone expressing interest in it.

Your doctor is hoping that by throwing some crap up on the wall that something will stick...pure and simple because sometimes it works.
He's not in a hurry because he's not the one hurting.
Getting insurance to pay for ASV is difficult even here in the US because insurance companies don't want to pay the big bucks.
Sounds like it is no different in Canada. It's all about the money and not about really taking care of the patient's needs. It sucks.

I know you are on disability.....any chance you have funds available to simply buy your own machine? I know of an online retailer here in the US that ships internationally and won't require a RX for international machine sales.
Check out secondwindcpap.com for prices.

I can't afford anything out of pocket. My AHI without the machines is 72. So I'm in a bad situation either way. Thanks for the tip, but I can't get my own machine.

Using the current machine helps somewhat with the obstructive sleep apnea that you have but will do nothing to help with the central sleep apnea part of your complex sleep apnea diagnosis.

Giving it time would only maybe help if you develop central apneas after starting cpap....but you had significant centrals prior to starting cpap.

I had mostly hypopneas before I started APAP therapy. Idk if it was central or not (dr didn't mention centrals). So I think the centrals are only happening because of the APAP/bipap machines. But with centrals this high, I can't see them improving in any meaningful way. There's so many, all the time.

Didn't I see your sleep study (pre cpap) showing centrals during the diagnostic sleep study or did I dream it?

Tell me about your diagnostic sleep study.....home study or in lab?
If home study did you wear some sort of belt or band around your chest or abdomen and did you wear any little sticky things on your forehead?

I don't have my sleep study results. I just know what my dr told me over the phone. In-lab sleep study. Stretchy bands around my torso. Leads stuck to my head and legs. Thing on my nose. Oximeter on my finger. Camera in my room.

Almost exclusively hypopneas. Worse on my back. AHI 72. Waited a month to call me with results (even though he said it was urgent). Then took weeks to get a machine (even though he said he wrote urgent on the request). Now it's taking long, again, to get me the proper machine.

Ah....okay....I guess I dreamed it. Sorry about that. Occupational hazard when I try to help so many different people at one time...I get confused.
In lab...so they would automatically know if central in nature for those hyponeas.
If it had been a home study...might not know for sure.

I think you are likely one of those people I talked about earlier (I think) that simply gets central apnea with even a low cpap pressure used to try to deal with obstructive sleep apnea. I have seen it happen with as low as 5 cm pressure. We know you tried 7 cm and had a truckload of centrals pop up.

Now sometimes people can have treatment emergent central apnea go away with time...but sometimes not....and sometimes even if it does go away it can take months and months of miserable sleep IF (big if) they even reduce.
More doable if the treatment emergent central is on the mild side (like AHI around 10 to 15) and not where yours wants to go.

The centrals are caused by an imbalance in the respiration where too much carbon dioxide is blown off and the blood levels don't get high enough for the brain to send the signal to breathe.

I have one other idea and it's radial as hell and would depend on what kind of mask you are using and how gutsy you are to try something way out in left field......but I need to know exactly which mask you are using first.

Okay....I found your mask in your first post (couldn't see it when I was replying before)..
DreamWear under the nose mask...which is good because it is the one I was hoping for because it lends to an easy adaptation to try my radical idea.

Which BTW isn't all that radical in the medical profession but it is out there on a limb. The whole idea is to try a mask modification that increases carbon dioxide in your mask so that hopefully your own blood levels of CO2 get high enough for the brain to know to send the breathe signal.
The centrals now are nothing more than the brain not telling you to breathe because it doesn't know that you need to breathe because the CO2 levels in your blood stream are too low.

The out of the box idea....your mask has 2 vent holes. One at the top of the mask on top of your head and the other is under your nose.
Block one of the vent holes with tape so that CO2 levels are increased slightly in the mask and you rebreathe the air and see if your CO2 levels increase enough for the brain to send the breathe signals.
Sounds scary I know but I have seen it work surprisingly well....but it all depends on if you are gutsy enough to try it.