RE: Do I have Cheyne-Stokes?
I think your doctor needs to assert that your current CPAP therapy is ineffective and results in numerous apparently central apnea throughout the night. He should recommend a clinical sleep study to evaluate bilevel and ASV. The only decision is to approve or deny the authorization, and your doctor may have to appeal a denial. I'll be honest, he is outside his wheelhouse on this complex and central apnea issue and he should be referring you to someone familiar with it.
RE: Do I have Cheyne-Stokes?
I will see what happens. He did mention doing a titration during the sleep study. I looked at my insurance website for "sleep medicine doctor" that were in-network and there are very few near me, and most seemed to be sinus doctors as well, but some also specialized in neurology or pulmonology.
I agree that this case may beyond what he typically treats, but I do think he is trying. I will try other doctors or talk to my insurance if I have to. I hate this system.
RE: Do I have Cheyne-Stokes?
If you feel your doctor needs some help with the subject, we can suggest some articles you can provide him. Your case is not that unusual and he should get acquainted with the bilevel with backup rate and ASV machines if he is going to practice. If you look at our forum population, and the number using ASV, he is probably under-diagnosing based simply on his assumption this is something rare.
RE: Do I have Cheyne-Stokes?
Yeah links would be useful. Looking at the few providers that are listed as in-network sleep medicine specialist, they all have quite bad reviews online. I am going through an ENT which is probably not any better, but I don't have confidence that people know what's going on. I'd really rather not go out-of-network as I met my in-network deductible already.... Anyone from Austin, TX have recommendations?
RE: Do I have Cheyne-Stokes?
Just getting an ASV titration study will answer all questions, it will show exactly what you need. I really doubt you have true CSR but CPAP induced periodic breathing.
RE: Do I have Cheyne-Stokes?
Here is one night that I had 74 minutes of 'CSR' and one shot is zoomed in. This was on CPAP and now I'm on ASV with NO known reason for central apnea.
https://imgur.com/a/bbF9aYM
RE: Do I have Cheyne-Stokes?
Last night my AHI dropped to 8, the lowest I have had. Still several CA events with just one OA event. I do seem to have similar periodic breathing patterns though, and not all of them result in apnea which I guess is better? One thing I did different last night was to not take my allergy nasal sprays, fluticasone and azelastine, as my nose felt good. These usually open my nose up quite a bit since the first is a corticosteroid.
Despite that improvement, I still feel exhausted this morning. Maybe AHI 8 is still enough to feel bad. I will keep track to see if this night was a trend to my CAs going down or just random. I'm still going to see if I can get that in lab sleep study.
Also thanks for all of the help so far in this journey.
RE: Do I have Cheyne-Stokes?
Don't lose sight of ASV. Your event rate will rise and fall, but your periodic breathing and central apnea is something CPAP can't deal with. Once you start ASV, you will wonder why it took so long. I recommend you start making a nuisance of yourself until your doctor relents and provides the study. Call his office every day or ever other day to see if it has been scheduled yet. You need to be the squeeky wheel. ASV is the correct therapy and you should settle for nothing less.
RE: Do I have Cheyne-Stokes?
Thanks sleeprider. I agree that I need to be the driving force to make this happen. I will be in contact with my doctors office to see what I can do. Thanks for your help so far. If they give me a hard time, I'll just have to find a different doctor that will listen to me. It's unfortunate, but it is my health so I have to advocate.
RE: Do I have Cheyne-Stokes?
Before I finally got on ASV, my AHI was all over the place and all were due to central apnea. I had my 'good' nights and my 'bad' nights, and just because I had a good night didn't mean that I didn't need ASV, it was the overall average and the bad nights that need to be strongly considered for more aggressive therapy (ASV).
