Brazen Therapy Thread

[KeepSmiling]

Brazen,

There are a couple of disorders that have to do with REM sleep; I do not know anything about them.

Everyone is different, CPAP treatment works for different conditions. Unfortunately small adjustments for settings, mask types etc, benefits some and not others so this can take time.

Also, there may be various amounts of improvement but not complete because there is more then one issue.

Keep at it. I know it is hard.

[Brazen]

Yeah, I know
I'm not doubting the benefits of xpap when my disordered sleep is obvious, even if it's not "bad" enough to raise tons of flags, OSCAR shows breathing restrictions.... using apap to reduce the sleep breathing effort can't be a bad thing, eh?

I don't know that REM sleep is my problem, or even part of it.

I need to find a doctor willing to do more than rubber stamp the most obvious issue and then ignore my continued health complaints.

[Brazen]

Well...
Met with the sleep clinic NP today.

It did not go well. That's an understatement. 

She wants me to do a titration study in clinic.
She noticed I had adjusted my settings and said, "It's extremely dangerous for you to adjust settings yourself."

So I said... Really? What is the danger?

She didn't seem to expect me to ask that and mumbled something about ineffective treatment.  So I asked if there was anything in my current use report suggesting ineffective treatment?
The only report she looks at is use hours and AHI.
Average AHI of 0.8 certainly doesn't suggest ineffective treatment. 

I asked her about Flow Limitations and she said she didn't understand what I was talking about.
Sleep specialist not familiar with flow limitations???

I asked about REM latency and she said she didn't believe that was my problem. What lead to that conclusion? She couldn't say.

Then she asked if I often fall out of bed.  What?

She then wanted to know if I was following up with my primary doc about my continuing fatigue and other health complaints.
Yes, I am. But we have identified a sleep issue so even if it's only a contributing factor shouldn't it be resolved to eliminate that from the equation?

Then she suggested it was all related to "long covid".
I've never tested positive for covid. Seems unlikely and not verifiable. 

It was a bizarre interaction.
She's willing to schedule the titration study but said if I want any more follow-up appointments I need to schedule them with Dr. X. Not her.
Evidently she fired me today.

I don't quite understand the purpose of a titration study but it would put me back on the EEG leads to see if there's a REM latency problem that cpap isn't addressing.

[Lucid]

I'm impressed with how persistently stood up for yourself in the face of this nonsense.  Seems like two steps forward:  moving on from this unhelpful doctor and being able to get new data.

[taylorgtr]

First off...I'm not a doctor, don't play one on TV, and didn't stay at a Holiday Inn Express last night....but OSA may only be a part of your situation. You mentioned lack of REM sleep and missing your dreams....is there a chance that there's another factor at play in addition to OSA? There are other sleep disorders out there - and that may be why the doc asked about falling out of bed.

I doubt that you have REM behavior disorder (e.g., sleepwalking), but it might be worth seeking out a doc who has experience in other sleep disorders in addition to OSA.



Comedian Mike Birbiglia talks about his experience in this clip from This American Life. 

[Brazen]

Lucid - thanks. I'm a nurse, we advocate for our patients and ourselves. Do no harm but take no s#!*.


Taylor - funny clip
Yes, my goal talking with her today was to try to get her thinking beyond osa to other possible sleep disorders. 
Since my initial sleep study showed increased REM latency (over 240mins vs normal 60-90) I was asking her to consider maybe that wasn't resolved by treating my apnea? Many things can affect REM, including prescription medications. 
I've met with her three times now, plus the in-clinic sleep study... sleep walking/REM behavior disorder has already been addressed and ruled out. Has nothing to do with REM latency and asking if I fall out of bed was off topic and weird.

I guess it was a poor assumption, expecting a sleep specialist NP to know about various sleep disorders beyond osa.

[taylorgtr]

Here's the book that Birbiglia mentions in the bit:

https://www.amazon.com/Promise-Sleep-Med...440509017/

I listened to the audio sample - in a strange coincidence, the author was born and raised in Walla Walla Washington, where Birbiglia had his major sleepwalking / jumping out the window incident.

[DaveL]

My previous sleep-doc-from-h*ll advised me to use a *brick*, keep it a long time,. and use a one-size-fits-all nasal mask. All were sold by the hospital's dme clinic. His criteria for success was AHI<5.0 and 4 hours use a night. He had over 3,000 patients. Busy man. I fired him too, except I waited too long.

Thank heaven for the wonderful people who provide help on this forum. My treatment is much better now.

DaveL
Toronto

[Brazen]

Oof.

I know mask fit is very personal and very trial and error.

Since Nov. 27 my leaks have been out of control. Prior to that I had them mostly controlled.
I hadn't changed anything.
F30 FFM for the last six months.

Three nights ago I put on a new mask cushion. Thought for sure that solved the issue.
Nope.

I don't know what to do.
No sense even using the machine with leaks like this.

I appreciate any insight anyone can provide.

[Jeff8356]

Have you tried adjusting the straps again? I find mine stretch over time and need a minor adjustment every once in a while.