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The Missing Ingredient In CPAP Therapy

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Commentator

The missing ingredient in CPAP therapy

Bear with me here because this will probably be my last real discussion in this forum and certainly the most difficult.

It is also the main reason I should leave.

I have become a skeptical old man, and like so many contrary old men I am proud of that, but somewhere along the way I lost something vital and it impacts adversely on both myself and those around me.

Way back in the pre-dinosaur era I saw the world differently ...... I had faith.

Wait! Don't skip out just yet. This is where it starts to get interesting.

Faith, for me is not a renewable resource, but while I still had some it made everything look different and much more importantly, end differently.

No I'm not talking about miracles or divine intervention and I'm not talking about religion, just faith in yourself and the universe, the power of belief and the changes that belief can make to our perception, persistence, outlook, actions, reactions and eventually the outcomes.

Ok I'd better cut to the chase while you are still here.

CPAP works better with faith. I'm not talking about incense and candles, just a generic kind of faith or belief.

If you need a different word to appease your world view I could switch to placebo. Yes placebo gets a bad wrap but it is real and it can have a powerful effect. We just haven't figured out how to invoke it properly yet and I doubt that we even have a proper definition for it.

So I've been hanging around here for months gradually eroding the foundations of this CPAP culture with endless questions and challenges, convincing myself that questions are good and understanding is essential but now I'm thinking I should have just kept my keyboard still and left things the way they were.

What is the point of this thread?

If faith or placebo is the missing ingredient in CPAP therapy we need to provide the necessary structure to support it.

We need to understand the value of simple arguments and dogmas for the CPAP culture and simple routines to do with diagnosis and training and yes the most obvious of all, simple instructions for cleaning. :)

Some people don't want to be bombarded with doubts and queries and arguments and alternatives. They just need a simple set of instructions that they can have faith in.

This is not about intelligence or education but a matter or efficiency, focus and choice.

Even from a scientific perspective there are times when it's not what people do that matters but why they do it and how it makes them feel.

Yes it would be nice to have real answers to real questions but not everybody needs that and those of us who do will just have to watch and wait and ponder.

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Sierra +0 points · about 1 month ago Sleep Innovater

My thoughts are to keep expectations in check. I've worn glasses since I was about 10 years old or so. When I first get a new pair they are perfect, but slowly regress as time goes by. New pair is like seeing the light again. But, now as I get older, I know what to expect.

If we skip forward to CPAP, my expectations were low. In fact I was hoping I would get diagnosed with not having apnea. Not the case, so now I use one. Did I ever expect it would lower my blood pressure, lower my cholesterol, prevent heart disease, reverse my diabetes, and keep my pants from wearing, tearing, or sagging at the knees? No, I did not. It does reduce my apnea, or so my machine tells me. Better sleep? Perhaps slightly. I do sleep through the night now about 50-70% of the time. Never did before. Is it worth it. Probably. Was it easy? No, but I figured it out. Good thing my expectations were low...

Then I start to realize that I do not hear so well. In a restaurant I can't hear the conversation at the table. So then come the hearing aids. They are going to cure everything? Right? Well they don't. This time I expected more but got less. That is my current project -- lowering expectations to reality.

Next the vision issue comes back. I notice that I can see well with one eye, but not the other. Go for a check, and it is not a simple pair of a new prescription. The optometrist tells me I have a cataract. So, now we research IOL options. My vision is going to be made perfect again? I hope so, but I'm starting to learn. Lower those expectations again...

Bottom line. There is a price to getting older, and there is a benefit in keeping expectations in check! Age happens!

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Rockethound +0 points · about 1 month ago

Expectations... I had a little different experience. I suffered with sleep apnea and didn't know what it was. I couldn't sleep, couldn't breath, was never rested. My friend had sleep apnea and slept with a BIPAP. I had never heard of it before. What he described to me about it sounded like it would help me. That was 2001. I went to the neurologist, had their sleep study, and finally got my CPAP in 2002! I was thrilled to get it. Since then I use it every night and don't even nap without it.

Was it magic? No, but it helped immeasurably. It didn't lower my blood pressure (I don't think) or help me loose weight. I had some hopes that it might, but never the expectations. But, it improved my life and health and I am very thankful for it.

And when we lost power and I had no CPAP, I struggled to sleep that night and it reinforced what the device did for me. And after a two hour drive to stay overnight, I turned around and drove home because I forgot my CPAP and wouldn't consider sleeping without it. I remember all too well what a struggle it was to sleep without it.

I try to learn from those who are further along life's journey than I am. I see their health struggles and know that my turn may come. That's part of the journey. You know the old saying that getting old is hard, but think of the alternative!

Dan

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Ruby +0 points · about 1 month ago Sleep Commentator

See my post below. Please.

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Ruby +0 points · about 1 month ago Sleep Commentator

I'm not sure what happened to my post but here is a short version of it. Gremlin, questions and challenges are just as important as getting information. If no one ever set a challenge or asked questions then we would be back to where we were 20 years ago--with patients just accepting what the doctor tells them. Asking for information and receiving it is important and this forum helps in that area. But this forum is not just for telling others what works for us and what doesn't. It's a place to see what patients need and maybe a research area to help that need. If we don't complain, challenge, question, then nothing will change. You can't leave. Your posts are very welcome (I hope someone didn't tell you differently) and for me personally, I look forward to your humorous take on some of this. So I fully expect you to stay with us. I am quite serious about this!

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Biguglygremlin +0 points · 17 days ago Original Poster Sleep Commentator

I understand what you are saying Ruby and appreciate the sentiment.

I often feel like a heretic here in a room full of devout CPAP apostles.

I haven't been part of a forum since the early years of HUB chat rooms.

I became involved in this forum because I saw the potential that you mention above.

I wanted to test that potential and experiment, push a few buttons and see what happens.

Yes there is potential but it is early days yet. Too early for what I was looking for.

I don't think this forum is quite ready to embrace all the functions you have described either.

It would need to be boosted and directed to achieve those goals.

It would take a concerted and protracted effort to reach new thresholds.

A more clearly defined structure and pathway with a sense of purpose.

So many obscure words in search of yet another missing ingredient.

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Ruby +0 points · 17 days ago Sleep Commentator

I sent you an email one other time but can't find the address now. I would really like to talk to you more about this--about the why and how of your comments. What could be done to get it to where it would be the most beneficial.

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Biguglygremlin +0 points · 14 days ago Original Poster Sleep Commentator

I think I should be upset about this. :(

The shame and embarrassment, and in public too!

You could search your sent folder or perhaps ask Sierra.

I'm pretty sure he would know.

He doesn't miss much.

Unlike some people I know! :)

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obbyone +0 points · 7 days ago

I am 43, BiPAP changed my life completely...all my body failures went back to normal (heart, sugar, blood pressure, better sleep...)...only problem: My belly growing due aerophagia and very gassy now... but hey! I am still alive!! 👌

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