Help - EDS worsened long term therapy

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Archy
Posts: 2
Joined: Sun Jun 09, 2024 1:29 am

Help - EDS worsened long term therapy

Post by Archy » Sun Jun 09, 2024 2:00 am

So I've been using a cpap or apap for 20 years now. Lately I've had mega daytime fatigue and sleepiness and drs still can't figure it out after many blood tests, sleep specialist, etc.

I was waking at 5hr mark n going to recliner without cpap for a while but fixed that with reflux meds + bed wedge. I sleep on my back. I usually use a chinstrap but lost it n found it again, don't think the chinstrap is in these logs. I've lost 7kgs and I'm 6ft6, 183kg (getting gastric bypass in a year). High dose ADHD meds due to bad ADHD, treatment resistant depression but on ketamine oral every second day, plus 2 other anti depressants. Had a significant increase in tiredness this year but can't tell why as I am same weight or less than I was last year. Significant loss of daytime function and takes me 5+ hrs to wakeup properly even with adhd meds. Trying to rehabilitate and get strength etc but the EDS + Fatigue is so extreme. I'm getting a new mask tuesday and possibily hiring a new machine as my Autoset 10 airsense is 2015 model, p30i mask is a few years old and the velcro seems to be less sticky. I recently a month ago got average 5hrs cpap up to 8hrs or something with the bed wedge and reflux med I had forgotten to take.

In the past I've never had issues with the cpap except I had to increase pressure from 8 to 10-12 to stop this weird I can't breath feeling last year, I didn't have cpap for a few months trying to figure out why. On Tuesday this machine will also be tested for pressure. They say it's end of life. I'm in Australia so that means 2k out of pocket. Not fun on disability payment.

Something I notice is I still wakeup at times around 8-9am. I have delayed sleep phase disorder and usually sleep 3am or later, 1pm wakeup and get 8-10hr sleeps. I feel like I'm not getting quality sleep. I do take a while to fall asleep, up to an hour. If I've been to sleep I usually fall asleep quick. I'm not sure how to do a time range export on sleephq. I can post a few days. AHI on a test many years ago was 30, Can't remember what last years was but I think similar (no cpap). Brain fog n memory issues make it hard to remember stuff.

https://sleephq.com/public/2085d73c-f06 ... 414d923cd1
https://sleephq.com/public/b944b15a-98c ... 38a5603fb9
https://sleephq.com/public/b8eb7c87-a19 ... a0b78f15d7
https://sleephq.com/public/7d6542f8-d22 ... 4bbb0e7d21
https://sleephq.com/public/983a0d07-f2e ... 9fef2a9f40
https://sleephq.com/public/3eaa5433-9b8 ... 1c6d790d11
https://sleephq.com/public/30f4494e-6ff ... 6846afa95c

Lemme know if you need more info.
Thanks

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Respirator99
Posts: 353
Joined: Mon Jul 05, 2021 12:39 am
Location: Australia

Re: Help - EDS worsened long term therapy

Post by Respirator99 » Mon Jun 10, 2024 3:39 am

Welcome to the forum.

Your charts don't look too bad on the whole - nothing to suggest the fatigue you are feeling. However, your respiration rate is on the high side, and you are breathing both fast and deep. This may be related to your various conditions or the medications you're on. This is well outside my limited expertise.

As for replacing your machine, you can get Resmed Airsense 10 Autoset for around $1,300. eg https://www.thecpapclinic.com.au/automatic-machines The Airsense 10 is a good choice - no real need to stump up the extra $$ for an Airsense 11.

Alternatively, are you on NDIS? It might be worth exploring if you can get a suitable machine included in your package.
* Download Oscar
* Oscar help
* An alternative to Oscar - try SleepHQ

I have no medical training or qualifications. Take my advice for what it's worth.

Archy
Posts: 2
Joined: Sun Jun 09, 2024 1:29 am

Re: Help - EDS worsened long term therapy

Post by Archy » Mon Jun 10, 2024 4:09 am

Thanks, NDIS denied it for autism but I can get an NILS loan. is the Airsense 11 worth the upgrade? Thinking of hiring one tomorrow for a month. Machine is quite old so I'd get either a 10 or 11, just wish I knew if the machine was faulty or not. Or if it's mask, or something else. It's been quite a challenge, never felt rested after sleep. Takes me about 5 hours to wakeup in the "morning" which I'd sell my soul if it wasn't the case. Thanks for the reply.