[CPAP] New to treatment: AHI Worsening

[Universeonwheels]

Hello,

I'm very new to treatment. I use a prescribed APAP. In the lab, I tested mostly central apneas so I was confused when I was prescribed APAP. I suppose however it's for insurance purposes.

Anyway, my AHI on the machine has gone from 10 to 33. In the lab, it was 19. I see my doc tomorrow. What do you suppose I should do?

[DeepBreathing]

G'day Universeonwheels. Welcome to Apnea Board.

If your diagnostic test showed a high rate of central apnea then you need an ASV (adaptive servo-ventilator) machine, not an APAP. Apparently the insurance system where you are requires you to go through a series of progressively more expensive machines and sleep studies until the magical day arrives when you get the ASV.

It would help us to offer more concrete advice if you could post a copy of your sleep study report. The full report including charts and tables, not just the written summary. Make sure to erase any personal ID before uploading it.

As for your appointment tomorrow, I'd put a number of questions to the doc:

• Does my sleep study show a preponderance of central apnea?
  
• If so, an APAP machine isn't the right solution, is it? In fact it's actually making things worse in terms of AHI.
  
• What is your plan for treating my central apnea? Does it include an ASV machines, and if not, why not?

Now many of us here know from experience that some doctors have a well developed sense of self-importance and do not take well to patients questioning their authority. So you will need to "read" the doctor and see how s/he is likely to react to your situation. You might want to go in super-tactful or a bit more assertive. That's going to be your decision when you are in the room with him/her.

[OpalRose]

We would need to see some data.  

Be sure there is an SD card in your Apap.
Download the OSCAR software.
Then use the links below in my signature line to guide you in organizing and taking a screenshot of the daily page in OSCAR.  
Use the attachment feature to post your data here.

Also, if you have a copy of your sleep study, go ahead and post that here too.

Please redact all personal data before posting.

[SarcasticDave94]

Hi Universeonwheels and welcome to Apnea Board.

The first thing I suggest is getting a hard copy of the multi-paged detailed sleep study report. It's yours legally, so get a copy. You need this for your personal health file, and you should post a redacted of personal info copy here on AB. It's important to post this, as it gives us some historical data on your apnea, and it's even more important as you mention high CA events.

Secondly, get your free copy of OSCAR so you can post sleep data from your APAP. This tells what's going on while on therapy and if adjustments are needed or what needs adjusted to optimize treatment settings. Especially at the start, include OSCAR screenshots with a reasonably detailed answer of "How do you feel regarding therapy?". I'm OK or I'm tired isn't a detailed enough answer that helps. How did you feel and what did you feel during therapy and upon wake-up are much more detailed.

You should see a common theme, we need data to know what's going on. And the above info requests ought to stay in this thread you started as long as it's on this starter topic.

[Sleeprider]

Be sure to read our wiki on justifying advanced PAP machines http://www.apneaboard.com/wiki/index.php...P_Machines  It is common for individuals diagnosed with central apnea to be trialed on CPAP and BiPAP before finally getting the ASV that they need.  We do recommend the Resmed Aircurve 10 ASV as the most comfortable and effective option in ASV therapy.   It is possible at some point your doctor may recommend a ST (spontaineous-timed) bilevel machine.  These are nearly always a disaster for CA patients, and you should fight hard to get ASV instead.

Try to get a prescription for ASV from your doctor. It is NOT necessary to have a sleep study to titrate ASV. Most of our members using ASV can start with the default settings for ASV in ASVauto mode as shown in the titration protocol below, and immediately achieve good efficacy.   I mention this because sleep studies are generally delayed due to the pandemic, and this can significantly delay getting the therapy you need.  In addition, if your insurance has high deductibles or copays, then additional studies are an unnecessary financial hardship and we can even direct you towards purchasing new or used machines at much lower cost than your DME supplier will provide with insurance coverage.

[Universeonwheels]

Hey,

Thanks for the advice! I will ask those questions to my provider tomorrow. I've attached my sleep report.

[Universeonwheels]

Hey Opal,

I've attached my OSCAR reports. As can be seen, I've had issues with mask-compliance, but have settled on Swift FX and it's working fairly well now. Thank you.

[Universeonwheels]

Hey Dave,

Thanks for your reply. I've included my in-lab study as well as some OSCAR reports. 

As for how I feel, I should begin with morning-to-night in a brief description. My wake-up time is scattered immensely, ranging from 6 AM to 6 PM. Regardless of how much I sleep, it's very difficult for me to manage to bring myself to consciousness, but I do so because I'm a highly conscientious person and strongly dislike being in bed all day. What results after I manage to get out of bed is a quite miserable mixture of oxymoronic exhaustion with high energy, that energy being agitated energy of both physical & mental form, runny nose for some reason, extreme muscle tension with very mild/transient pain, for some reason excessively teary eyes, either incredibly cold or incredibly hot, difficulty holding onto a thought, irritability, really itchy skin for some odd reason, and a sort of anhedonia. These symptoms were all present before CPAP therapy. I had one day which was very unusually fantastic while on my APAP which occurred last week, but it was only a day--most of these symptoms vanished and I was only left with exhaustion, but a "pleasant" exhaustion. I've been tested extensively based on all my symptoms, taken dozens of medications and done therapy to no avail, and finally have come upon sleep apnea. By night, I'm generally feeling a bit less agitated but still very much so; overall I feel better toward the night. It's difficult for me to get to sleep at a regular time as I feel "stuck", as if I don't want to bother trying. Which brings me to the fact I frequently have quite bad insomnia (sometimes no sleep). I will address the insomnia tomorrow with my doctor. I've had both insomnia and sleep apnea since I was 11 years old. I'm now 19. I figured the sleep apnea went away as I stopped waking up gasping for air around 13, and therefore did not get help as no one else noticed. My orthodontist believes my obstructive apneas were most likely far more severe before I had my only ever orthodontic work done starting 17 years old. My orthodontic work consisted (and still is finishing and therefore consisting) of bringing all my teeth forward by about 1 cm, and therefore my tongue. At the time, I did not know I had sleep apnea, and was doing it for TMJ disorder which is now entirely ameliorated. I can say most of all I'm looking forward to having some tranquil energy for once, as well as whatever I can salvage of my cognitive functions.

[SarcasticDave94]

Welcome,

I've had more or less the same results due to apnea.

I see event counts of 41 CA to 10 OA, and 44 Hypopnea. I would say predominant/pre-existing is likely on CA. I see an ASV pathway in your future.

I would address this with applicable Doc, point out the predominance of CA and ask when you should get an ASV needs discussed. At your discretion, decide to handle appropriately according to doc's attitude, approachability, demeanor, etc. CPAP, APAP may be OK but not great. BPAP, ST will be horrible. Eventually a push for ResMed AirCurve ASV will need to happen as I see it.

Now is the time to take notes on all the bad rest, or its lack, that this machine makes worse. All the issues before the machine count too. Harp on complaints.

[Universeonwheels]

I will fight my hardest to get an ASV prescription tomorrow. Thank you very much for your reply.