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RE: Weird breathing patterns? 3 months on CPAP, AHI of 4, still feel awful
Hi there, fellow brit.
Considering your local health authority decided to go with the Elite rather than the Autoset, you may have a harder time convincing them to give you either the Autoset or bilevel unless you have a particularly helpful doctor, especially if your AHI looks good.
It's taken me a year to get onto ASV (the correct therapy for my central sleep apnea) and with the NHS being so backlogged now because of the pandemic, it might be a while before anything like that pans out. Or that might just be me and my local health authority.
RE: Weird breathing patterns? 3 months on CPAP, AHI of 4, still feel awful
So I had my telephone "check in" appointment with the sleep clinic. It started with an Epworth Sleepiness Scale which she was surprised by my score of 14 as "the CPAP therapy is working, your apnea is cured" [I assume from the ResMed cloud app she's seen: Leaks = Green Face, Compliance = Excellent, AHI < 5 and that's the basis of it working].
I mentioned I'd used Oscar to read actual telemetry from the machine and she didn't seem to know about it and seemed really surprised that I had an issue with flow limitations. She said something along the lines of "that shouldn't be happening as the CPAP is curing your apnea, you must have some kind of anatomical issue that the CPAP can't correct".
She may be right in my case. I had surgery for thyroid cancer about 8 years ago and, along with my thyroid I had 3 levels of lymph nodes removed. On top of that my hypoglossal nerve was damaged (accidentally cut and reconnected) during the surgery. The result of that is the right side of my tongue is almost completely paralysed and is very puffy and looks swollen due to muscle atrophy.
In any case the outcome is that I should keep increasing the pressure gradually until I get relief or I can't tolerate it. I've also been referred for an examination at an ENT clinic to see if there is anything anatomically causing the flow limitation. I've also been referred for an appointment with the clinical lead of the sleep clinic. The waiting lists are a bit annoying, 8 weeks to see the clinical lead and probably 3 months for ENT, but at least they're taking me seriously.
Thanks for all your help here, if I hadn't pointed out the flow limitations I would have just been sent back to my GP to investigate non sleep related causes.
RE: Weird breathing patterns? 3 months on CPAP, AHI of 4, still feel awful
I'm currently up to a pressure of 13 and not really seeing a difference in terms of numbers, other than a few centrals starting to creep in and pushing my AHI over the magic number 5!
Do you think it's worth trying a soft cervical collar yet or should I stick with gradually ramping up the pressure for now?
RE: Weird breathing patterns? 3 months on CPAP, AHI of 4, still feel awful
Hi Ratchick, thanks for the warm welcome,, I'm glad you got your ASV in the end, what sort of hoops did you have to jump through to get it if you don't mind me asking?
Do some NHS trusts give out the AutoSet as standard? Cheapskating on £100 when it could save them clinic time and get better outcomes seems like a false economy, but then again my brother in law's Elite has changed his life. He had an AHI in the 30s and after 3 months he felt like a new man and has done for over a year now.
I got him to let me take a look at his readings in Oscar and over the last 30 days it's quite common for him to have a 0 AHI with it averaging below 0.5 for the last 3 months. In his case I guess the NHS has saved money and got the desired outcome, which is great and maybe that's what works for a large majority of people. I just wish they made a bit more effort to be proactive with investigating people who aren't responding even if the AHI is below 5!
RE: Weird breathing patterns? 3 months on CPAP, AHI of 4, still feel awful
I'm glad you got some referrals but sorry they'll be delayed. Earlier you mentioned that you could buy your own machine. When you talk with the sleep doc and the ENT, I recommend that you mention that. They might be willing to write a prescription for an out-of-NHS purchase that they wouldn't authorize for in-system dispensing.
Do you breathe through your mouth a lot at night? If yes, your swollen tongue might be partly responsible for the flow limitations and OAs. Or not -- there are stretches of time when you have minimal FLs and no OAs. If you're also breathing through your mouth during those periods, then your tongue would probably not be a culprit. (Those are not medically informed opinions -- just me trying to imagine what's going on.)
I'd recommend going ahead and trying a cervical collar. It can't hurt to try, and if it helps, then that's to the good and also gives us some new information to work with.
