Brazen Therapy Thread

[Brazen]

Thanks Dave
The sympathy means a lot.

Still no results from the sleep study.

Calling a new doc tomorrow. Gotta keep trying.

[DaveL]

Here's a thread I started about "Sleep Quality".


http://www.apneaboard.com/forums/Thread-...ep-Quality

What I know:

I can't tell whether I have OSA on my own. I needed a sleep study to prove that. However, the results had nothing to do with "feeling better" and sleep quality. Although I was compliant, I still felt like *-rap*. That went on until I learned how to listen to people that help here.

and, though I've used OSA equipment for about 35 years, I still wonder why? Because sleep quality is still an unachievable goal. Why? Don't know.

I hope there's something in that post that helps.

[Brazen]

Thanks Dave
I read that thread, good discussion. 

I just don't understand why medical "sleep specialists" are so unhelpful when it comes to quality sleep.

I tried the help offered by the experts here. I really do appreciate the time they have put into trying to help me.
But, the past suggestions didn't help me feel any better.
So, I tried to go back to the doc.
Their recommendation is proving to be incredibly unhelpful as well. 

217 nights.
Worse off than before.

[DaveL]

Medical....how do they measure success?  
Here's my story.  It's not important, unless you learn something from it that helps you in your journey.

(Ontario, Canada)
Sleep Doc asks--
* Still using the machine? (check)
* 4 hours per night? (check)
* AHI less than 5?  (check)  (COMPLIANT!)

There's no sleep quality in that. No feeling of well being.

In the beginning, this is what it took to be sentenced to severe sleep apnea


* Family Doc provides a referral to a Sleep Doc (it's key--can't go to a sleep doc direct here)
* Sleep Doc arranges a first sleep test
* OSA Diagnosed (my first sleep doc did that, way-back)
* Second sleep test determines pressure
* Sleep Doc writes a prescription, addressed to a DME supplier he chooses  (CPAP only; pressure)
* Hospital owns 1/2 of the centre 
* Who owns the other half? (no-one knows)
* Hospital gets 1/2 (?) of the profit
* DME offers choices (cpap only; machine make; humidifier (check); mask (one make fits all)
* 3 choices--1. Expensive; 2. More Expensive; 3. Most expensive

I had moved.  He was my second sleep doc,....I asked him:
* What's new in CPAP therapy?
* Answer--Nothing...except heated hoses, but you don't need those (so I bought one....)
* Then--he said he had 3,000 patients.  (That's how he measures his own success)
* Set up meetings every 17 months, so I remained in his care  Almost 15 years

First change---found a DME supplier that cared; What I really wanted was a contact there that was on cpap.  (Nope; no success there)

I networked.  I asked anyone who had mask marks at work where they went, who their sleep doc was, and were they happy?

Happy is the key.  

For me CPAP therapy is far more stressful than having OSA.  I think that HAPPY comes from talking to people here and getting hints about what works for them.

An aside:  at the Dentist's office someone said they wanted a sleep study.  I said measure your blood oxygen level. If it's high 90's you're ok.  Don't get a sleep study; it's a life sentence. 

So I watch my sleep hygiene.  Lately I'm not doing well.  I don't sleep long enough; I wake up in the night. Maybe I need a new bed.

We must advocate for ourselves.

[Brazen]

Dave - Thank you, your story helps.  And not all that different from my own, except for total time struggling.
I am all about advocating for myself.
Since Sept. 2020, when all this started, I have had three primary docs, one sleep doc, GI specialist, Dietitian, two psychiatrists, two therapists, and been fired by one sleep NP.
I've called a new sleep disorder practice and waiting to hear back from them about an appointment with the doctor I've heard promising reviews for.

It's not okay that those professionals who claim to be the experts in sleep disorders won't work to solve issues affecting sleep quality.  Lack of sleep quality is disordered sleep.

I don't know who else to turn to. Don't know what to research myself to find a solution.
CPAP certainly doesn't feel like the solution but I keep using the d@mn thing because maybe I'm wrong, maybe it will help.
What is it they say about continuing to do the same thing and expecting a different result? Yeah. I'm there.

[DaveL]

Meditation

Go within

[Brazen]

That's an idea. 
I tend to fall asleep when I try. 

[DaveL]

There's a cure.

A Zen Monk told me that one of his friends always fell asleep. The top Monk had him sit on the edge of the water well that was very, very deep. He never fell asleep again.

[DaveL]

For a long time I attended group sessions about meditation conducted by a Buddhist nun. I fell asleep every time. She took to winking at me as I left. I really felt the sessions were beautiful; I felt a huge weight was gone from my shoulders. I never asked her why...

But sometimes I need to look within to learn why my treatment for OSA has left me feeling rough. Thought I would share.

[Brazen]

Thank you Dave
The support means a lot