One year in and I still feel horrible

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
drfaust
Posts: 55
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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. :)

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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
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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.

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Machine: ResMed 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
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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."

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Additional Comments: Pressure 6-11. RDI of 12, almost all RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.

TedVPAP
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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, ....

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TBonz
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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
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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).

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Additional Comments: Pressure 6-11. RDI of 12, almost all RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.

freetimecreations
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Re: One year in and I still feel horrible

Post by freetimecreations » Wed Feb 21, 2018 5:37 pm

Noctuary wrote:
Wed Feb 21, 2018 3:15 pm
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. :/
My (former) doctor shined a flashlight in my mouth and said "your airway is fine." This is the same doctor who ordered the sleep study and signed off on the prescription. Going to doctors is like going to a casino, except there's no food court.

I have been in this for four years now and am still exhausted most days. I've lost my job, have no income and have been living off the generosity of others. In a few days I will be evicted. This ......xxxxxx edited out bad word .... miserable disease has wrecked me. Now I'm just waiting.
I only had time to skip over your 4 year journey of posts here. If waiting for eviction is the plan, you may have more time to read every one of your old posts and what others replied.
I hope any leads you have put out there come through for you.

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Noctuary
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Re: One year in and I still feel horrible

Post by Noctuary » Wed Feb 21, 2018 9:30 pm

I think I'm one of those to whom the mask itself causes microarousals. It seems only when I am severely exhausted to I have any benefit. The rest of the time I either can't fall asleep or I spend seven hours in a light sleep. It's just a miserable existence, fighting fatigue.

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Beerus
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Re: One year in and I still feel horrible

Post by Beerus » Thu Feb 22, 2018 8:32 am

I wish you the best drfaust. your story is quite heartbreaking, I hope you can find relief somewhere. I just started CPAP about 3 weeks ago and I am not having a great experience either. On nights it works I feel great, but most nights i can't keep seal on mask and i feel terrible the next morning.

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NightWatch23
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Re: One year in and I still feel horrible

Post by NightWatch23 » Thu Feb 22, 2018 11:15 pm

drfaust, I'm sorry the other provider wasn't helpful. It seems to me like the way we train and pay docs leads to this kind of tunnel vision. I am fortunate to have found a wonderful naturopath who listens to me when I speak, sees me on time in a large office with windows on two sides, and all the scary stuff hidden. She's a family doc, so sends me to specialists when needed, and I just wish they could all be like her. I was so excited to find a naturopath sleep specialist only 1.5 hrs away in Seattle, but she's not taking new clients. Perhaps there's such a person near you?

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Cpapian
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Re: One year in and I still feel horrible

Post by Cpapian » Fri Feb 23, 2018 11:13 am

Drfaust.......

Perhaps doctors aren't your answer. Or maybe they need evidence to help them diagnose the problem. You might benefit from becoming your own sleep detective.

I don't know what your finances are like, but some possibilities are doing your own sleep investigations. An oximeter (sp?) Can be purchased $50 +/- capable of recording your nights sleep in terms of oxygen. The CMS 50D+ available through Amazon. There are two models one records the nights events, the other doesn't. So if you pursue this option, make sure you get the recording type. This product integrates with Sleepyhead. It might provide some additional insight into why you feel lousy.

Another option is one of those smart watches that record sleep and give insight into the various sleep stages. I recently acquired a fitbit charge 2. In the short time I have had it, it has been interesting to me to see how much stress affects my sleep. But it has also been interesting to see how often I awake during the night and how much REM sleep I get on a nightly basis. In my case it was reassuring to see this.

Another forum member here has his own sleep lab, video recording his sleep.

Autumnj
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Re: One year in and I still feel horrible

Post by Autumnj » Mon Apr 23, 2018 7:31 pm

I am having the exact same issues as you. I have been using my cpap machine since September 1st and I still wake up every morning feeling unrefreshed and like complete crap. I am so miserable. I feel as though my sleep specialist is not even listening to me. I am so tired all day. I walk around in a fog. I am forgetful and spacey. It's awful.

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Julie
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Re: One year in and I still feel horrible

Post by Julie » Mon Apr 23, 2018 8:25 pm

Autumn - start a new thread for yourself - this one's old and you're addressing someone who's responded to another poster. Fill in your Profile with make/model of machine and mask and what pressure settings you're using and, in the post, note meds you take, hours and position you sleep in, etc. You may just need a little bump in min. pressure, but we need more info before suggesting that.

Chalkie
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Re: One year in and I still feel horrible

Post by Chalkie » Tue Apr 24, 2018 6:06 am

I can't offer any answers to the OP but can just say I sympathise with the OP and understand how frustrated they feel. In my case I know I have something to work with in getting the AHI scores down but I have been trying to get this therapy right for so long and am sick of feeling terrible also.

It sounds like we are not out of the textbook and people like us seem to always pose a problem for the medical establishment, who need to be humble enough to accept medical science is always a work in progress.
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