One year in and I still feel horrible

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
drfaust
Posts: 55
Joined: Sat Feb 25, 2017 9:09 pm

Re: One year in and I still feel horrible

Post by drfaust » Mon Feb 12, 2018 3:52 pm

Cpapian wrote:Another doctor you might think about consulting is Dr. Steven Parks. He is in New York, I believe, which is a little closer than Australia. He writes books, has a website with info, and from what I have heard an expert on UARS. With technology today, you might be able to send him your sleep tests results and have a conference call for your appointment.

You might already do these things, but in case you don't here are two suggestions re doctor's appointments.

With respect to your doctor who laughed at you, please take your partner with you to your next doctor appointment. If your partner can't come bring someone to be your advocate. Advise your advocate/partner when you want them to step in, or not, and what you want them to do i.e. comfort you or scold the doctor, whatever you think is best. (This helps to temper the doctor's manner)

Also, you have a complex problem, so bring them a summary of your situation. Have someone edit it for clarity, remove emotional adjectives. Include a brief description of the problem, current medication, other non-related medical issues, what has been done and results and include a final section of the ramifications of this illness on your work. (This removes the emotion from describing your problem, eliminates recycling old ideas and, the doctor has to pay attention because it is no longer a "he said, he said" situation).

I don't have great sleep either, I fix it then loose it, then fix it and loose it continually. Luckily, I am retired so no work impact. But just minutes of REM (per my FitBit Charge 2). I have been reading about sleep architecture and one thing I noticed is the purpose of REM is unknown. People without REM do not show problems with memory and cognition. Maybe that is why doctors are saying your sleep is fine.

What language do you talk in when you are asleep?
I'll definitely google this doctor. And that's a great idea for my next doctor's appointment. My partner can't come, but having a document would be helpful.

And apparently the language is mostly gibberish, until it turns into profanities. Not going to post quotes on this boad. :)

_________________
Machine: AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: DreamWear Nasal CPAP Mask with Headgear
Additional Comments: Pressure 6-11. RDI of 12, almost all RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.

drfaust
Posts: 55
Joined: Sat Feb 25, 2017 9:09 pm

Re: One year in and I still feel horrible

Post by drfaust » Mon Feb 12, 2018 4:18 pm

Wulfman... wrote:
drfaust wrote:I posted updates after 3 and 6 months on CPAP, when I was still feeling terrible, and I was told to keep with it.

I'm back again. It's been a full year of near 100% compliance, and I have absolutely miserable sleep, I wake up feeling like I've been punched in the face, and my ESS is around 14.
Is there any hope? Or should I give up?
Additional Comments: Pressure 7-11. RDI of 12, most RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.


Have you TRIED using a straight pressure setting?
Some of us find that the changing pressures during the night disturb our sleep.


Den

.
Yep. My first 9 months I had it fixed at 8. My sleep was just as bad. I was constantly swallowing air and the pressure would blow my mouth open, even with the chin strap (lip leak). Then I figured out how to adjust it myself. I lowered the starting pressure to 7. Last week I lowered again to 6 and my AHI reported by the machine is actually now consistently under .5. And sleepyhead says I spend almost all of the time between 6 and 7, with only occasional excursions higher. But it was still bad even when I was at a fixed pressure.

_________________
Machine: AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: DreamWear Nasal CPAP Mask with Headgear
Additional Comments: Pressure 6-11. RDI of 12, almost all RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.

drfaust
Posts: 55
Joined: Sat Feb 25, 2017 9:09 pm

Re: One year in and I still feel horrible

Post by drfaust » Tue Feb 13, 2018 7:27 pm

In case anyone who is listening cares --

I saw a different provider today in the sleep clinic (instead of the provider who gave me the absolutely awful experience last time) and the result was pretty much the same.

All he had to offer was "You have a CPAP. Your apnea is treated. I'm sorry you still feed terrible, but there's really nothing else I can do about it. <shrug>"

I'm coming to the conclusion that "sleep physicians" are basically just CPAP salespeople and don't actually want to solve problems. This is the third physician I've seen now, and the answer is always just the same. "Sorry -- you have a CPAP. If you still have a horrible time sleeping, that's on you."

_________________
Machine: AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: DreamWear Nasal CPAP Mask with Headgear
Additional Comments: Pressure 6-11. RDI of 12, almost all RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.

TedVPAP
Posts: 729
Joined: Sat Jun 12, 2010 10:29 am

Re: One year in and I still feel horrible

Post by TedVPAP » Tue Feb 13, 2018 9:46 pm

Sorry to hear that.
Unfortunately, doctors don't have all the answers. Maybe you should search for help elsewhere; diet, religion, physical activity, volunteerism, therapy, ....

_________________
Machine: DreamStation Auto CPAP Machine
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: AutoPAP 16-20, Ultimate Chin Strap http://sleepapneasolutionsinc.com/
Use data to optimize your xPAP treatment:
how to see your data https://sleep.tnet.com/resources/sleepyhead
how to present your data https://sleep.tnet.com/resources/sleepyhead/shorganize
how to post your data https://sleep.tnet.com/reference/tips/imgur

TBonz
Posts: 9
Joined: Sat Oct 28, 2017 11:37 am

Re: One year in and I still feel horrible

Post by TBonz » Sun Feb 18, 2018 1:45 am

drfaust wrote:
Tue Feb 13, 2018 7:27 pm
In case anyone who is listening cares --

I saw a different provider today in the sleep clinic (instead of the provider who gave me the absolutely awful experience last time) and the result was pretty much the same.

All he had to offer was "You have a CPAP. Your apnea is treated. I'm sorry you still feed terrible, but there's really nothing else I can do about it. <shrug>"

I'm coming to the conclusion that "sleep physicians" are basically just CPAP salespeople and don't actually want to solve problems. This is the third physician I've seen now, and the answer is always just the same. "Sorry -- you have a CPAP. If you still have a horrible time sleeping, that's on you."
Seems to me if your numbers are good, then they are like, "Well it's working, so what do you want ME to do?"

I told my new provider that I'm still exhausted, even though my numbers are good, etc. Note that I have fibromylagia which of course makes one exhausted without any sleep apnea issues. So he wants me to go to a rheumatologist and work on that. Last time I tried to solve that, all they offered were meds that would sock on another 20-30 pounds. Hopefully by now, meds are better.

The point is - once the sleep specialists see good numbers, they feel their job is being done properly. If you still feel like crap, sucks to be you. :/

drfaust
Posts: 55
Joined: Sat Feb 25, 2017 9:09 pm

Re: One year in and I still feel horrible

Post by drfaust » Mon Feb 19, 2018 2:19 pm

TBonz wrote:
Sun Feb 18, 2018 1:45 am
drfaust wrote:
Tue Feb 13, 2018 7:27 pm
In case anyone who is listening cares --

I saw a different provider today in the sleep clinic (instead of the provider who gave me the absolutely awful experience last time) and the result was pretty much the same.

All he had to offer was "You have a CPAP. Your apnea is treated. I'm sorry you still feed terrible, but there's really nothing else I can do about it. <shrug>"

I'm coming to the conclusion that "sleep physicians" are basically just CPAP salespeople and don't actually want to solve problems. This is the third physician I've seen now, and the answer is always just the same. "Sorry -- you have a CPAP. If you still have a horrible time sleeping, that's on you."
Seems to me if your numbers are good, then they are like, "Well it's working, so what do you want ME to do?"

I told my new provider that I'm still exhausted, even though my numbers are good, etc. Note that I have fibromylagia which of course makes one exhausted without any sleep apnea issues. So he wants me to go to a rheumatologist and work on that. Last time I tried to solve that, all they offered were meds that would sock on another 20-30 pounds. Hopefully by now, meds are better.

The point is - once the sleep specialists see good numbers, they feel their job is being done properly. If you still feel like crap, sucks to be you. :/
YUP! I used to think that sleep medicine would help treat sleep issues -- in general. Now I'm convinced that they only treat a handful of issues (apnea, narcolepsy, etc). Once you have a diagnosis, they focus only on that specific diagnosis and don't look at the whole picture of sleep.

Note that in my sleep study, I basically didn't have any apneas or hypopneas -- they were all RERAs. The machine can't record EEG, so it really has no idea whether one is having frequent cortical arousals or not. So in my case, the numbers my machine gives me for AHI are the same as they were in my original sleep study -- an AHI of around 1.

I asked whether there was the possibility that other arousals were happening that the machine wasn't recording, and the doctor said "No -- not with numbers like that." "But those were my AHI numbers in my original sleep study, which diagnosed me with apnea." "Look, your disease is treated. If you don't like the treatment, don't use it. You can sleep without the machine if you want. If the treatment is worse than the disease, go with the disease." (almost verbatim quotes from our meeting).

_________________
Machine: AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: DreamWear Nasal CPAP Mask with Headgear
Additional Comments: Pressure 6-11. RDI of 12, almost all RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.