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Cpap therapy worked great and 9 months later I went to being tired again

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cpapuserbuttired +1 point · 14 days ago Original Poster

So after a month with cpap I had lots of energy dealing up at 5am naturally and fully awake and focused…after 9 months I started to feel tired and sleepy again, and the past six months I feel just like I felt before I used cpap…my “myair” app scores me consistently above 98. And to make things worst this week I’ve had major eye bags every day 😭😭😭

Stress, weight and activities and meals are pretty much the same…

Went to get another sleep study and they told me I don’t have any apnea events and there’s nothing they could tell that’s wrong with me…I still woke up tired that night on the sleep study… I want that feeling I had after my first month with cpap, like I think this is how am addict would feel, like I’ll do whatever to get that energy feeling back…help?? Doctor suggestion was to start getting medicated to sleep better…I don’t want to do that…I’ve taken valerian root and melatonin from time to time but I don’t take it consistently to not build resistance to them. Appreciate any feedback if im not alone in this situation and any solutions would be great…

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cpapuserbuttired +1 point · 14 days ago Original Poster

I use the nasal pillow and I don’t think it leaks, on the sleep study it didn’t show it leaked or anything…

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Sierra +1 point · 14 days ago Sleep Patron

One thing you may want to try is downloading the OSCAR program. It is free and runs on a PC or Mac. It does require a SD card reader to download the data to the computer. It will tell you in detail what is going on during the night. All the data from the first month should be on your SD card, so you can compare current results to what you were getting initially.

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cpapuserbuttired +0 points · 12 days ago Original Poster

Thank you! I’ll look into how to do this, I currently use the my air app to look at the metrics.

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Sierra +0 points · 12 days ago Sleep Patron

OSCAR will give you much more detail than MyAir. Assuming you have not deleted anything from your SD card, the detailed data from the first use of the machine should be all there to look at and compare to what is happening now.

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Biguglygremlin +0 points · 13 days ago Sleep Enthusiast

Hi cpapuserbuttired,

I'm not sure why I'm responding to this thread or what I can say that might be useful.

Unfortunately, many people exist in the place you have discovered and there may be a thousand causes or none at all.

Some of the more obvious culprits include stress, depression, viruses, low testosterone, high iron (hemochromatosis), etc.

What caught my attention was your underlying logic and your expressions because, over a shorter duration, they could also apply to a form of placebo.

It seems to me that one of the most powerful tools we have to manage our lives and deal with indisposition and illness is placebo, yet we have almost no way to grasp it or use it in any dependable or sustainable way.

I doubt that this has been very helpful, sorry, but it does get away from charts and such.

Melatonin

RBD

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cpapuserbuttired +0 points · 12 days ago Original Poster

So the cpap doesn’t work and it was all on my mind ? Why would the placebo effect stop?

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PutSleepApneatoBed +0 points · 13 days ago

Are you using a CPAP or an APAP? What were your AHIs during REM and non REM on your original, diagnostic sleep study? And what is your pressure setting (CPAP) or pressure setting range (APAP)? Finally, are you dreaming? Did you dream when you felt better? Did you dream before initial treatment?

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Biguglygremlin +0 points · 13 days ago Sleep Enthusiast

Hi PutSleepApneatoBed,

Do you have some suggestions or theories to do with dreaming?

I have a rather ragged relationship with dreams myself so that is another subject that grabs my attention yet it is not a subject that is frequently raised. (See above links)

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PutSleepApneatoBed +0 points · 12 days ago

Hi, BUG!

The dreaming connection is that, in my case at least, my AHI was far higher in REM than non REM. (My Sleep Tech, Laura, has advised that that is quite common). Upon initial diagnosis, my overall AHI was 19, but in REM (when I could still get into REM) it was 83.

So here’s the theory: If you stop remembering your dreams, it’s possible that you have stopped dreaming, because you can no longer maintain REM sleep.
This happened to me at about puberty (the voice box descends in both genders blocking the airway.) But when I asked my Dad if he remembered his dreams he said”no”. (Mom, on the other hand) lived at least three other lives at night.)

Many years later, when I diagnosed my own OSA, I diagnosed Dad’s, but by then it was too late for him to handle the headgear (strokes) or remember when he awoke in the middle of the night why he was wearing a mask on his face(multi-infarct dementia.)

In retrospect, Mom dodged OSA, notwithstanding that her brother and father had bad cases (not formally diagnosed, but in retrospect I recognize clear symptoms) because as a young child she had her tonsils and adenoids removed enlarging her airway.

Mom is still with us, living independently in her own home at 94, but due to vision problems she has given up the car keys. And she still has an active dream life she tells me.

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Biguglygremlin +0 points · 11 days ago Sleep Enthusiast

Thank you PutSleepApneatoBed

I agree that REM and dreams are a significant part of the problem and hence the solution when it comes to many sleep disorders but there seems to be little focus or real science in that direction.

Personally I rarely have any trouble getting to sleep but because of RBD REM is the stuff of nighmares for me.

I have tried Melatonin on a number of occasions and consistently found that for me it increases REM frequency and duration which is exactly what I cannot afford.

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PutSleepApneatoBed +0 points · 11 days ago

Dear BigUglyGremlin (or may I call you BUG? 😉)

I have, thankfully, no personal experience with RBD, (although my poor Dad had such a bad case that he and Mom had to purchase a California King and Mom had to sleep facing away from him to avoid getting slugged inadvertently.)

However, there is someone on our Board at the Alliance of Sleep Apnea Partners (ASAP) who does. This gentleman has a rather dramatic history with RBD and was recently telling me about the medications he takes for his RBD which he feels are really helping him. I will ask him to post here and tell you about his experiences…Also, he has been participating in a lot of clinical research studies on the subject…

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Biguglygremlin +0 points · 11 days ago Sleep Enthusiast

BUG is fine.

That would be really appreciated thanks! :)

Now that it's an option we probably should move the discussion on RBD back to this thread. RBD

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cpapuserbuttired +0 points · 12 days ago Original Poster

Cpap resmed airsense

AHI was over 60 before and after close to zero

Pressure for recalibrated to two points more after the study…but no change…it’s super strong before and after…

I’ve always dreamt, before and after.

Thanks for your reply

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PutSleepApneatoBed +0 points · 12 days ago

Cpapuserbuttired: Are you having trouble exhaling against the higher pressure level? R U using Exhalation assist? Also, if the exhalation pressure is a problem, a BiPAP might help...for a lot of people however, exhalation assist helps.

One other thing: I’ve found that some formulations/strengths of melatonin leave me feeling VERY hung over and “drugged” in the AM. And I have avoided Valerian because it is not necessarily good for the liver, OSA and DM2 are already hard on the liver….

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cpapuserbuttired +0 points · 12 days ago Original Poster

Inhaling and exhaling are a breeze and easy, although when I take the thing of my nose I feel a jet turbine blowing up on my face 🤣🤣🤣 melatonin works sometimes but I never feel drowsy…that’s my conundrum, nothing has changed, it just feels the cpap rest effect has disappeared even though my AHI is basically zero now

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PutSleepApneatoBed +0 points · 11 days ago

Sometimes, the relief during initial treatment from burden of life long exhaustion can be pretty dramatic. Mine was. But then, after a while, the slope of improvement tapers off. You may not be back were you were, but you may also no longer be feeling the major difference from your pre- treatment life. So, your sense of backsliding may be subjective. Another possibility: you may be experiencing mouth leaks or other leaks automatically raising the pressure on your APAP. That happened to me and I felt as though I was trying to exhale against a hurricane, and that in and of itself, was awakening me. A chin strap solved the problem, until I could learn to keep my mouth shut, which other patients assured me I would eventually be able to do. (They were right.)

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Sierra +0 points · 12 days ago Sleep Patron

An AHI of 60 is pretty high and getting it close to zero is a big improvement. If you download OSCAR and post a daily report I can have a look at it and see if there is anything that could be improved.

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cpapuserbuttired +0 points · 12 days ago Original Poster

Thank you so much!! Yeah I went with two doctors and they told me I’m as bad as it gets 🤣🤣🤣 I’m pretty fit and have a wide and short neck (love genetics) …I just initially went to the dr cause my wife couldn’t sleep from my Snoring and gasping for air episodes (which I have no recollection ) let me figure out the Oscar thing

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PutSleepApneatoBed +0 points · 13 days ago

Are you using a CPAP or an APAP? What were your AHIs during REM and non REM on your original, diagnostic sleep study? And what is your pressure setting (CPAP) or pressure setting range (APAP)? Finally, are you dreaming? Did you dream when you felt better? Did you dream before initial treatment?

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Biguglygremlin +0 points · 11 days ago Sleep Enthusiast

I'm sorry cpapuserbuttired, I raised the subject of placebo knowing it was not relevant to your query beyond it's absence but wishing that it was better understood and more attainable.

I have no knowledge of Placebo even though I am quite interested in it, in part because it's such a vague thing and hard to get a handle on.

I think if placebo was capable of operating beyond the short term it would have a different name, perhaps optimism or faith.

We all hear stories or testimonials of amazing benefits from initial treatments including CPAP and IMO there has usually been a real benefit but often what I would label placebo cuts in and boosts the benefit beyond sustainable levels. Later, as the enthusiasm ebbs or the placebo runs out, there is an inverse reaction, complete with what seems like withdrawal and a longing to get back to that place.

I suspect that this process happens to most of us much of the time in subtle ways, like a mild form of bi-polar, it is part of how we experience life, but I've begun to suspect that it can be way more powerful than that because a few years ago I discovered that my testosterone levels had dropped to 2 (a healthy young male is closer to 30) so I began replacement therapy. For brief few days, it rocked my world and I spent months trying to understand why it stopped and hoping to recapture that state and eventually concluded that it must have been a powerful placebo effect and I never was able to invoke it again.

Despite my style of writing (or lack thereof), I do not have a wild imagination or flights of fancy yet I still long for that place. Hence my continuing curiosity regarding placebo.

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PutSleepApneatoBed +0 points · 11 days ago

Dear BUG:

I don’t think it was a placebo effect, but rather what, for lack of a better term, I’ll call the law of diminishing returns. it’s analogous to the answer I gave above to cpapuserbuttired re his PAP treatment.

When your testosterone level was so extraordinarily low, the impact of elevating it from, say, 2 to 10 points would almost inevitably be more dramatic than the effect you would feel subjectively in increasing from 10 to 20. The very first few points of increase were remedying a dramatic deficiency. You would expect dramatic results—-not so the subsequent increases.

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Biguglygremlin +0 points · 11 days ago Sleep Enthusiast

Diminishing returns is the reality underlying many things human and essentially summarises the entire pattern of our lives.

Hope, enthusiasm, excitement, and yes perhaps even placebo, are how we resist or even push back such a relentless force.

It seems to me that everything is tangled up together and perpetually circling around especially with the more subtle words.

Language, as we know it, is not adequate to really 'see' or clarify most aspects related to humans and numbers are beyond ambiguous.

Back to the origin of this thread, it is probably the paramount question for many forum members and readers.

Somewhere amongst the many threads over the history of this forum there will be aspects or suggestions that could resonate as a potential new direction.

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