Kiwii's Search for Restful Sleep

[PoolQ]

Kiwi, yes it can be recovered from. I avoid the term "treated" because that to me sounds like it is still there and just covered up somehow. Part of it is your work, well most if not all of it, HOWEVER the person you chose to sit through that journey with is so very important. Not all therapists are the same or right for the same people. interview them and change to a new one if you need to. I this case it IS all about you and you need to get what you need.

Thoughts:
1. understand your strengths, you have made it a long way in life and it sounds like that may not have been easy, but you did it.
2. recover the child that for all this time has been standing guard and send them off to play (at last)
3. Take time for you new self to learn the things  that you have been avoiding all this time

Find someone that understands and doesn't use the forbidden "well what do you think?" if we knew what we thought, we would not be there.


Peace

[kiwii]

Thank you, PoolQ. Your response is very reassuring, positive and hopeful. It helps.

[kiwii]

Rant:

When I saw Dr #2 last week, I forgot to ask for a copy of my prescription while I was there. So I called them, and they've mailed it to me.

 

It is a generic list of all supplies related to xPAP, complete with limitations on how often they can be ordered...

...and when you get to the bottom it says, No in front of everything having to do with a machine.

This guy wants to lump everyone together, as if everyone has an insurance restriction on their supplies. Or trying to lump me into a generic group because, if the ODI from my sleep test was 63.1, it is too low therefore it cannot have occurred. I spent an 8 hour night with 23 minutes of O2 less than 80%. I also spent 23 minutes in CA (I don't know if they coincided, but it seems mighty suspicious to me). I've just had two doctors look at my actual freaking data (treated data) and say that I need back up, and evaluation for supplemental oxygen. Dr. #2 said that any further daytime symptoms cannot be related to sleep apnea  (yeah, you read that right) and that I should see my PCP from here on out. See you in a year.



Advice please
I realize this probably sounds ridiculous. I would, however, genuinely appreciate a gentle reality check...
I want a good prescription. Dr. #1 gave me a good Rx, but it was for 99 months instead of years or lifetime, and I'm not seeing him anymore.
This Rx is garbage. I could contact Dr 2's office and make them fix it. Who knows, it could even be an honest mistake by his office staff.
OR, I could just wait and ask Dr #3 for a new Rx when I get a chance.
OR, contact Dr #3, explain the problem, and ask her to give me a proper Rx.

The complicating factor is that Dr 2 & Dr 3 are associates. All of the notes and stuff are right there available to both of them. If I contact Dr 2's office, they will see that I am now with Dr. 3 (which is a fearful thing for me).

I am inclined to wait. Emotionally I want to freaking make him fix it... but, also emotionally, I want to hide and not draw attention to myself.

Thanks. Sorry to be such a PITA.

..realized that I don't really need this Rx right away. It can wait.

[SarcasticDave94]

I had to get urgent care appointment at my pulmonary doc office due to severe central issues while on BiPAP. Incredibly fatigued and getting progressively worse from centrals. The nurse and attending doc, who wasn't my normal pulmonary doc, listened to my complaint and with BiPAP PSG info, stressed the need to begin ASV path in spring of '17. If needed, make the docs fight it out, but you're the patient. Demand attention and proper treatment.

[SarcasticDave94]

FWIW Here's my ASV path:

http://www.apneaboard.com/forums/Thread-...guru-input

[kiwii]

Sorry for my poor wording.

It is only a copy of my prescription from the week before with Dr 2 that is messed up (I just wanted it on hand for online purchases). Fortunately, the current doctors are working together and agree with each other that I should have back up.

I am so grateful to you and others for sharing your experiences. If not for this board, I don't know what I would do.

eta: Ha! I guess I've just answered my own question. I don't know why it wasn't obvious before.

[SarcasticDave94]

Welcome and glad I could assist.

OK don't disturb me any more than I am already.

I'm on coffee break.

[HalfAsleep]

<snip>

I may have to just break down and contact my old therapist. He moved back to China, but said that I could contact him anytime that I'd like. I've felt too inhibited though, and do not want to impose or intrude into his life.

If I consult a new therapist, I would have to explain stuff and some of it is repressed. I am really loathe to open that can of worms.

IME, there are many gradations between these two options. A person could, for instance, line up a therapist simply to prepare for the sleep study and debrief afterwards.  You might even be able to skype one in while at the sleep center....


The other little piece of advice for a sleep study... figure out what features of a night time room are least triggering. Do you prefer outside light (i.e. a window); does the softness of the bed matter; can you take your own pillows; is there an optimal temperature for the room; can you bring an aroma that helps you feel good; will ice cream and cookies make everything a-ok?

For my last study, I took a gigantic duffel full of pillows of every which variety.

[HalfAsleep]

Oh, my gosh, Kiwii, you have been through the mill... I guess I thought all this time you had an ASV, but it turns out you have a BPAP. But now you're on an ASV quest, or at least something or combinations or things that will give you more oxygen and less breath craziness.

It does sound as though you're through the stage where the sleep docs are all misbehaving. You've found at least one, now, who's on your side and makes sense? And your PCP is on board, and you're routed to a neurologist and a pulmonologist? I would say you're moving right along! Although, IME, this stuff never seems to move along fast enough.

At any rate, progress is being made?

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Just as an FYI, you have allergies or asthma, correct? When my allergist (whom I don't see for allergies or asthma, lol) heard that I have high flow limits and the sleep center folks weren't addressing it, she had me experiment with my steroid inhaler (Flovent), with one spritz twice a day (half normal dose) for a month trial. She was trying to see if it helped with flow limits. It didn't seem to for me, but maybe it would on someone else (e.g. someone who has asthma?).

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It's occurring to me that there's sleep disordered breathing and then there's trauma-induced sleep disordered breathing. And that standard protocols address some of the latter, but not the whole presentation. I'm supposing, for instance, that a traumatized person might simply hold their breath as in a trauma reaction; this would be neither obstructive nor central. But it would presumably require a machine to keep the breathing regular.

[kiwii]

Those are good ideas. I have some lavender filled sachets that are calming.

What I really need is a dog to alert me if a threat/danger comes near the door. Or some way to prevent someone from entering, in a way that I am sure cannot be circumvented.

Irrationally (yes, I know it is ridiculous), I do have a little plush white tiger cub that makes me feel braver and somewhat safe. sigh.

Dave, thanks for the laughter! I love your sense of humor.