“Failed” Cpap Machines, doctor says he doesn’t know what to do.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Grapefruit22
Posts: 11
Joined: Fri Nov 10, 2023 4:30 pm

Re: “Failed” Cpap Machines, doctor says he doesn’t know what to do.

Post by Grapefruit22 » Wed Nov 22, 2023 12:23 pm

* Have your blood tests for inflammation done again in a month or two. You want to find out whether it's acute or chronic. More here: https://my.clevelandclinic.org/health/s ... flammation
It's been well over a year with the inflammation issues but they have not found anything at all. I have been given SEVERAL rounds of steroids 2 injections, a prednisolone pack, and several single dose fluconazole.
* Be very persistent about getting those sleep studies. The details matter, and we can give you better advice once we are able to look at them.
Unfortunately, the sleep clinic won't give me anymore. His suggestion is to get the machine even tho it makes me extremely sick, he said he doesn't know what to do but refuses further testing.
* In your shoes, I'd hold off on getting an ASV machine until you and your sleep doctor can arrive at a better understanding of your condition.
So far Aero Flow hasn't contacted me yet about getting the ASV machine.
* Ozij was suggesting that you ask your regular doctor for a blood oxygen monitor to use for a few days and nights. (PCP stand for "primary care physician.")
I contacted my primary doctor and she doesn't think they can offer an at-home pulse ox sleeping test. It's just not something her office does and she doesn't think that they even have an overnight pulse ox machine.
* Do you live at a high altitude? Are you taking any narcotic-type medications? (Either of those might contribute to central apnea.)
I live in North Texas, and I have never taken any narcotics in my life.
You are right that some central apnea is "treatment emergent." It shows up when you use a PAP machine. So it's important to see whether you had CAs in a test without a machine.

* Some central apnea is idiopathic, meaning there's no discoverable reason for it. So if you do have it -- which isn't clear -- that wouldn't necessarily mean you have some worrisome health condition.

I'm really sorry your doctors don't listen to you better. One thing you might try is to prepare a written list of observations and questions ahead of time and go over it with them. Another is to bring a family member or friend with you to your appointments so they can listen in and, if the doctor is blowing you off, help to get the discussion back on track.

I have unfortunately brought lists and they haven't even been looked at. My husband has been extremely busy, he doesn't have time to come to the doctor's appointments, but he's about to get medical power of attorney if this continues happening, He is getting quite fed up and thinks they are all lying.

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Grapefruit22
Posts: 11
Joined: Fri Nov 10, 2023 4:30 pm

Re: “Failed” Cpap Machines, doctor says he doesn’t know what to do.

Post by Grapefruit22 » Wed Nov 22, 2023 12:48 pm

Okay, I'm attempting to use Imgur lol...

This is the ASV paper I was able to get ahold of from 4bettersleep, I still cannot get any of their other papers, they have not sent any other ones to my doctor and I am no longer able to log in on the patient portal for some reason.
Page 1 https://imgur.com/gd3KU0w
Page 2 https://imgur.com/y0VvXzu

Symptoms after having ASV test:
Migraine for 7 days
Head pressure and ear pain 7 days
Struggling to breathe a full breath and off-balance 2 days
Painful upset stomach 3 days
Bloated gassy 2 days - even with gas pills


This is the first test from the allergy & breathing clinic They gave me a sleep aid that was really strong, no machine was used.
Page 1 https://imgur.com/Q103DsP
Page 2 https://imgur.com/2zNCtC5
Page 3 https://imgur.com/dVEHBJC
Page 4 https://imgur.com/D9JrB6W
Page 5 https://imgur.com/UbTmVDs
Page 6 https://imgur.com/yth0DwB
Page 7 https://imgur.com/Mcsq6Cu
( there are other pages but they are squiggle lines/graphs I can add them if needed? )

After this sleep test, I drove home and slept all day into the evening when my husband came in and woke me up, I felt like I hadn't slept at all and could have continued sleeping, my eyes burned. My husband suspects they gave me WAY too strong of a sleep aid. I didn't even remember driving home.

- Have to make 2 posts reached max urls -

User avatar
Grapefruit22
Posts: 11
Joined: Fri Nov 10, 2023 4:30 pm

Re: “Failed” Cpap Machines, doctor says he doesn’t know what to do.

Post by Grapefruit22 » Wed Nov 22, 2023 12:49 pm

-- second post with rest of Urls --

This is the second test, I refused the sleep aid and they said it was a cpap/bipap test.

Page 1 https://imgur.com/arRkLqF
Page 2 https://imgur.com/S2IaLDX
Page 3 https://imgur.com/hbTkbEh
Page 4 https://imgur.com/tbgvmvi
Page 5 https://imgur.com/855LaeQ
Page 6 https://imgur.com/6G77hTd

Symptoms after this test:
Migraine for 6 days
Head pressure for 6 days
Heartburn and chest pain 3 days
Severe bloating and stomach pain 3 days
Trouble eating full meals 2 days
Extreme Rosacea flair-up over nose and cheeks - still have this months later.
Dizzy and balance issues 2 days

If anything is missing let me know, it might be a page I didn't add on here. I am still trying to get the rest of the most recent tests from 4bettersleep but its VERY odd I cannot access the patient portal anymore and that he has not sent any of the sleep tests to my doctor other than his " final diagnosis ".