One year in and I still feel horrible

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49er
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Re: One year in and I still feel horrible

Post by 49er » Sun Jan 28, 2018 4:04 pm

drfaust,

That is horrible that neurologist treated you like she did. Sheesh!

I just emailed Dr. Eckert today and wanted to see if he knew anyone who might help in the US. I will let you know if he responds.

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lucas7bm
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Re: One year in and I still feel horrible

Post by lucas7bm » Sun Jan 28, 2018 4:28 pm

drfaust wrote:I should also add that with ambien, I actually sleep much better. I don't talk, I don't have nightmares (I have vivid, but normal weird innocuous dreams), I don't get aroused during the night and I wake up feeling refreshed and like I can tackle the world.

But obviously that is not a long-term solution. I just use it one or twice a week so that I can be a normal, functioning member of society and so that my mood doesn't become so poor that I give up on life entirely.


Have you ever tried using marijuana? I don't know how much it helps with sleep talking, I'm gonna search some articles about it, but it's definitely a better middle/long-term solution which also helps with sleep apneas (last time I checked, it can reduce up to 30 or 40% of apneas. I believe it's worth trying. I can't stand waiting one month to buy my machine/mask, I definitely couldn't wait one year.
"Act as if the maxims of your action were to become through your will a universal law of nature." (KANT, Immanuel)

drfaust
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Re: One year in and I still feel horrible

Post by drfaust » Sun Jan 28, 2018 4:48 pm

49er wrote:drfaust,

That is horrible that neurologist treated you like she did. Sheesh!

I just emailed Dr. Eckert today and wanted to see if he knew anyone who might help in the US. I will let you know if he responds.


Thank you!!

I sometimes wonder if I might have a mild form of narcolepsy. I don't know, though, and no doctors have ever brought it up. I do not have cataplexy, but I do sometimes have hallucinations and sleep paralysis. And my nighttime sleep is obviously horrible.

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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
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Re: One year in and I still feel horrible

Post by drfaust » Sun Jan 28, 2018 4:50 pm

lucas7bm wrote:
drfaust wrote:I should also add that with ambien, I actually sleep much better. I don't talk, I don't have nightmares (I have vivid, but normal weird innocuous dreams), I don't get aroused during the night and I wake up feeling refreshed and like I can tackle the world.

But obviously that is not a long-term solution. I just use it one or twice a week so that I can be a normal, functioning member of society and so that my mood doesn't become so poor that I give up on life entirely.


Have you ever tried using marijuana? I don't know how much it helps with sleep talking, I'm gonna search some articles about it, but it's definitely a better middle/long-term solution which also helps with sleep apneas (last time I checked, it can reduce up to 30 or 40% of apneas. I believe it's worth trying. I can't stand waiting one month to buy my machine/mask, I definitely couldn't wait one year.


Thanks. I actually live in a legal state. I've tried CBD oil, but that doesn't help me. Regular MJ makes me sleepy, but then the sleep is even worse than normal, so it's not a good solution for me.

_________________
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.

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Re: One year in and I still feel horrible

Post by lucas7bm » Sun Jan 28, 2018 6:46 pm

drfaust wrote:
lucas7bm wrote:
drfaust wrote:I should also add that with ambien, I actually sleep much better. I don't talk, I don't have nightmares (I have vivid, but normal weird innocuous dreams), I don't get aroused during the night and I wake up feeling refreshed and like I can tackle the world.

But obviously that is not a long-term solution. I just use it one or twice a week so that I can be a normal, functioning member of society and so that my mood doesn't become so poor that I give up on life entirely.


Have you ever tried using marijuana? I don't know how much it helps with sleep talking, I'm gonna search some articles about it, but it's definitely a better middle/long-term solution which also helps with sleep apneas (last time I checked, it can reduce up to 30 or 40% of apneas. I believe it's worth trying. I can't stand waiting one month to buy my machine/mask, I definitely couldn't wait one year.


Thanks. I actually live in a legal state. I've tried CBD oil, but that doesn't help me. Regular MJ makes me sleepy, but then the sleep is even worse than normal, so it's not a good solution for me.


Is there any kind of drug that could help with your sleep talking which could be used in a long-term treatment? Because it seems pretty clear that your problems are all revolving around the sleep talking problem, since it doesn't allow you to get a proper CPAP treatment. Maybe some drug that doesn't necessarily makes you sleep, but keep your talking for when - and just when - you're awake.
"Act as if the maxims of your action were to become through your will a universal law of nature." (KANT, Immanuel)

nawchem
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Re: One year in and I still feel horrible

Post by nawchem » Sun Jan 28, 2018 9:40 pm

drfaust I have some similar symptoms to you and I have UARS. I also sleep talk, sleep walk, and I awaken with dreams so vivid for a minute I'll wonder if it really happened. I was told those are symptoms of not getting enough rest. I wonder if you've reinforced it in your mind by continueing trying and not being rested. All my awakenings occur in the last 4 hours and I was told that is when I need to use cpap. When I get in a sleep rut I'll time my sleep hours just try to get a couple on cpap towards the end of the night. I also use benadryl which is bad for you, but I've found its great for knocking me out. I use an herbal remedy ashwaganda and herbal teas that help you sleep.

I have a real problem with grinding my teeth so I use a cervical pillow it tilts my head back a bit so I'm not able to grind my teeth. I've actully put duct tape over my mouth which works for a few hours, you get enough saliva on it its not sticky anymore. They make medical grade hypoallergenic tape, maybe that would work for you.

One other thing I do is a sleep reset, I just stay up all night, the next night I'm knocked out and sleep hard.

There's an awesome free website with a meditation for sleeping, I've fallen asleep during all the meditations.The meditations start with relaxation exercises then the visualization the whole time she says to rest your body but don't fall asleep. There's something about fighting to not sleep that makes me drop off.
https://www.meditainment.com/meditation ... ing-asleep

i might be full of it, but maybe you can train yourself into sleeping. Be patient, I often find it works when i do something, then wait. Its when I'm waiting that the success comes.
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49er
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Re: One year in and I still feel horrible

Post by 49er » Mon Jan 29, 2018 2:51 am

drfaust wrote:
49er wrote:drfaust,

That is horrible that neurologist treated you like she did. Sheesh!

I just emailed Dr. Eckert today and wanted to see if he knew anyone who might help in the US. I will let you know if he responds.


Thank you!!

I sometimes wonder if I might have a mild form of narcolepsy. I don't know, though, and no doctors have ever brought it up. I do not have cataplexy, but I do sometimes have hallucinations and sleep paralysis. And my nighttime sleep is obviously horrible.


He did respond and I sent you a PM.

Regarding having Narcolepsy, that is hard to say. No matter what, your situation sounds very frustrating.

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Arlene1963
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Re: One year in and I still feel horrible

Post by Arlene1963 » Mon Jan 29, 2018 6:29 am

drfaust, the doctor who treated you so abysmally is obviously one of the fortunate ones who has never experienced the soul sucking despair and bleakness of lack of good sleep. Hell is a place where no-one ever sleeps.

I went back again and reread your 6 month thread. In that thread Robysue states the following: "It took me a very long time to get comfortable with the idea that maybe I was better off taking medicine on a nightly basis than struggling to stay asleep without taking the meds."

You have tried so much to make this work, and it is certainly not for lack of effort after a full year.

Your despair is so clear in your opening post, and the huge effect this is having on your work life as well, this situation is just not sustainable.

You mention in a later post that: "I should also add that with ambien, I actually sleep much better. I don't talk, I don't have nightmares (I have vivid, but normal weird innocuous dreams), I don't get aroused during the night and I wake up feeling refreshed and like I can tackle the world."

Respite from the struggle is needed. If Ambien helps, just see it as a temporary solution, but why not take it over next few weeks or months, so that you can recover and have refreshing sleep, and then have the energy and strength to go back into the "battle" again to try to figure this out without medication, should you choose. Talk this over with your doctor and see how he or she feels about this idea.

Just my 2 cents and also it comes with wishes for you for calm peaceful deep sleep.
Last edited by Arlene1963 on Mon Jan 29, 2018 3:10 pm, edited 1 time in total.

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Re: One year in and I still feel horrible

Post by fog.apnea » Mon Jan 29, 2018 2:22 pm

It took me over 4 months to understand what would work for me and till then my AHI was <1 (similar to yours i.e. in the normal range) from DAY 1. However I was NOT feeling good mostly (not as severe as you) but clearly therapy wasn't showing results as it is expected if you believe in the AHI numbers. That's what my neuro told me when I presented my situation that according to him and the AHI reports therapy is working and nothing he could suggest.

I turned out to be sensitive to narrowing my pressure settings. I know my situation is somewhat simple compared to yours but FWIW more on that here .. viewtopic.php?f=1&t=156504&p=1219284#p1219284

Your situation sounds more complex but I guess my experience will give you some food for thought. Good luck!!

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drfaust
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Re: One year in and I still feel horrible

Post by drfaust » Tue Feb 06, 2018 5:29 pm

Thanks so much, Arlene! I have a wonderful psychiatrist who is helping me work through all of this, and I'm waiting on a referral to see a different sleep physician. I'm ok taking things to help -- I just know that they stop working after a while. That's what I'm scared of. The day that medications stop working because I've developed a tolerance. Hence my apprehension in taking ambien daily. Klonopin is another medication that I took nightly for a year and it helped so very very much. But I became worried that it might stop working, so I've tapered down to essentially nothing. But on the nights I do take it, I feel like a human again. I wish I could take it every night, but I reserve it for just when I'm feeling absolutely horrible and it's a last resort, since I know regular use will make it ineffective. It's been a great medication for me, though.
Arlene1963 wrote:drfaust, the doctor who treated you so abysmally is obviously one of the fortunate ones who has never experienced the soul sucking despair and bleakness of lack of good sleep. Hell is a place where no-one ever sleeps.

I went back again and reread your 6 month thread. In that thread Robysue states the following: "It took me a very long time to get comfortable with the idea that maybe I was better off taking medicine on a nightly basis than struggling to stay asleep without taking the meds."

You have tried so much to make this work, and it is certainly not for lack of effort after a full year.

Your despair is so clear in your opening post, and the huge effect this is having on your work life as well, this situation is just not sustainable.

You mention in a later post that: "I should also add that with ambien, I actually sleep much better. I don't talk, I don't have nightmares (I have vivid, but normal weird innocuous dreams), I don't get aroused during the night and I wake up feeling refreshed and like I can tackle the world."

Respite from the struggle is needed. If Ambien helps, just see it as a temporary solution, but why not take it over next few weeks or months, so that you can recover and have refreshing sleep, and then have the energy and strength to go back into the "battle" again to try to figure this out without medication, should you choose. Talk this over with your doctor and see how he or she feels about this idea.

Just my 2 cents and also it comes with wishes for you for calm peaceful deep sleep.

_________________
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
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Re: One year in and I still feel horrible

Post by drfaust » Tue Feb 06, 2018 5:33 pm

I use the headspace app for meditation. It's helpful and I enjoy it. I also have a heart rate variability biofeedback device for my phone, which helps you train your parasympathetic nervous system (your "rest and digest" system) to engage. They're certainly useful. But my sleep is still horrible.

I agree with benadryl -- when I do take it, I sleep wonderfully. There are a few things that help me like that -- benadryl and klonopin primarily, and ambien to a lesser extent. But I don't want to take them too often for fear of building up a tolerance so they no longer work.

I'm glad staying up works for you. But for me it would be a one-way road to mental health nightmares. I have chronic migraine and the severity of my headaches (and my ability to work) are directly correlated to my sleep. And my daily mental health is directly correlated to my sleep. If I don't sleep (and I rarely sleep well), I have horrible depression. But when I'm well-rested, I do just fine.
nawchem wrote:drfaust I have some similar symptoms to you and I have UARS. I also sleep talk, sleep walk, and I awaken with dreams so vivid for a minute I'll wonder if it really happened. I was told those are symptoms of not getting enough rest. I wonder if you've reinforced it in your mind by continueing trying and not being rested. All my awakenings occur in the last 4 hours and I was told that is when I need to use cpap. When I get in a sleep rut I'll time my sleep hours just try to get a couple on cpap towards the end of the night. I also use benadryl which is bad for you, but I've found its great for knocking me out. I use an herbal remedy ashwaganda and herbal teas that help you sleep.

I have a real problem with grinding my teeth so I use a cervical pillow it tilts my head back a bit so I'm not able to grind my teeth. I've actully put duct tape over my mouth which works for a few hours, you get enough saliva on it its not sticky anymore. They make medical grade hypoallergenic tape, maybe that would work for you.

One other thing I do is a sleep reset, I just stay up all night, the next night I'm knocked out and sleep hard.

There's an awesome free website with a meditation for sleeping, I've fallen asleep during all the meditations.The meditations start with relaxation exercises then the visualization the whole time she says to rest your body but don't fall asleep. There's something about fighting to not sleep that makes me drop off.
https://www.meditainment.com/meditation ... ing-asleep

i might be full of it, but maybe you can train yourself into sleeping. Be patient, I often find it works when i do something, then wait. Its when I'm waiting that the success comes.

_________________
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 06, 2018 5:36 pm

Thanks for the link -- I'll read this carefully! For most of the year I was on a fixed pressure of 8 (with the 3 EPR on the Airsense 10). I only recently went in and opened up the settings so they go from 7 to 11. I might try going back in and restricting them again -- but I didn't do well, even when the pressure was fixed.

It certainly can't hurt anything to try, though.

But I have a feeling I'm one of those "low arousal threshold" people, so that anything will disrupt my sleep.

I had I think 7 or 8% N3 sleep and 0 REM sleep in both of my sleep studies (original diagnosis study and subsequent titration), and around 85-ish% N2 (meh) sleep, with lots of spontaneous arousals, in addition to the respiratory arousals.
fog.apnea wrote:It took me over 4 months to understand what would work for me and till then my AHI was <1 (similar to yours i.e. in the normal range) from DAY 1. However I was NOT feeling good mostly (not as severe as you) but clearly therapy wasn't showing results as it is expected if you believe in the AHI numbers. That's what my neuro told me when I presented my situation that according to him and the AHI reports therapy is working and nothing he could suggest.

I turned out to be sensitive to narrowing my pressure settings. I know my situation is somewhat simple compared to yours but FWIW more on that here .. viewtopic.php?f=1&t=156504&p=1219284#p1219284

Your situation sounds more complex but I guess my experience will give you some food for thought. Good luck!!

_________________
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.

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ShinRyoku
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Re: One year in and I still feel horrible

Post by ShinRyoku » Tue Feb 06, 2018 5:52 pm

drfaust wrote:I agree with benadryl -- when I do take it, I sleep wonderfully. There are a few things that help me like that -- benadryl and klonopin primarily, and ambien to a lesser extent. But I don't want to take them too often for fear of building up a tolerance so they no longer work.
Is there a specific reason why you can't take Benadryl on a regular basis? Benadryl has some side effects and possible interactions with other medications, but in general dependence and tolerance aren't high on the list of issues with Benadryl. It may be worthwhile asking your doctors about hydroxyzine, which is similar to Benadryl.

TedVPAP wrote: The Ultimate Chin Strap closes the jaw like a standard chin strap, but it also covers the mouth. You can still leak but it is minimized. With effort, you can still open your jaw and mouth breath.
This may be worth a try for you. It doesn't prevent mouth opening like taping does, but it will limit the amount of air leaking that occurs while you are talking.
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Nothing I say on the forum should be taken as medical advice.

drfaust
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Re: One year in and I still feel horrible

Post by drfaust » Tue Feb 06, 2018 6:10 pm

ShinRyoku wrote:
drfaust wrote:I agree with benadryl -- when I do take it, I sleep wonderfully. There are a few things that help me like that -- benadryl and klonopin primarily, and ambien to a lesser extent. But I don't want to take them too often for fear of building up a tolerance so they no longer work.
Is there a specific reason why you can't take Benadryl on a regular basis? Benadryl has some side effects and possible interactions with other medications, but in general dependence and tolerance aren't high on the list of issues with Benadryl. It may be worthwhile asking your doctors about hydroxyzine, which is similar to Benadryl.
Every doctor I've ever spoken with has uniformly said to use benadryl sparingly and that tolerance can indeed develop.

ShinRyoku wrote:
TedVPAP wrote: The Ultimate Chin Strap closes the jaw like a standard chin strap, but it also covers the mouth. You can still leak but it is minimized. With effort, you can still open your jaw and mouth breath.
This may be worth a try for you. It doesn't prevent mouth opening like taping does, but it will limit the amount of air leaking that occurs while you are talking.
To be honest, that chin strap looks like a torture device. I'm not worried about the actual amount of air leaking when I talk. That is, it's not leaks per se that are the issue, it's the physical sensation of air gushing from my nasal cavity to my mouth. It seems to wake me constantly all night. Unless the mask were fully sealed off (which it is not), it won't fix the issue. I should also mention that I have nighttime claustrophobia. Having my mouth covered will surely trigger panic attacks, which I can't control during sleep.

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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.

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Re: One year in and I still feel horrible

Post by NightWatch23 » Tue Feb 06, 2018 6:36 pm

Hello drfaust. I'm sorry I have nothing helpful to offer, I just wanted to say thanks for this thread. Sometimes it helps a little just to know there are others who understand what we're going through. My stats are different than yours, but I've also been laughed at by doctors, been mildly assaulted nightly by a machine that's not helping, still feel terrible, and often think of giving up. I have kids, so it's not an option. Along with diet and exercise, sleep is a pillar of health, but it's hard to know what it means until it's taken from you.