New Doctor - what data to provide?

[HalfAsleep]

I am so scared to go tomorrow. I'm hyperventilating which I've never done before. Course I know what to do from when I was in nursing, just doesn't seem to be making it any easier.

Anyone else with ptsd view their sleep doctor as a threat?

((((((Kiwii))))) I can see where it could feel frightening to be around doctors and/or medical facilities, but even more so if you have PTSD. And sleep is an aspect of our lives where we're extremely vulnerable.

[Sleeprider]

I think your therapy and event rate has progressed well. I'm not sure what you're expecting, but the doctor is simply going see if you're using the machine, and ask if you feel it is helping. If you have other things that need addressed, it is your chance to raise some questions. What is the source of your anxiety?

[kiwii]

Thanks guys, much appreciated.

I think the source of the anxiety is complicated by having been triggered by the xPAP early on. I woke up terrified, believing that I was back in time and being forcibly held underwater for longer than I could hold my breath. Normally I cannot remember bad things that happened to me when I was little. It's not like it is any big deal. The problem is that there has been a residual affect: I have been more jumpy than usual, more scared to leave the house, and I see people (in general) as being more of a potential threat than usual. Since the first sleep doctor has (to my mind) proven himself to be untrustworthy, and I've encountered a similar trend with the DME (and read of other's with similar experiences) I am emotionally extrapolating that to the whole sleep industry as being shady and suspicious.

I guess I am kind of in scared little kid mode. I know that I need to snap out of it. I just can't seem to accomplish it though.  

eta: One good thing... I'm really lucky that I associate the xPAP with feeling good and look forward to using it each night. That could easily have gone south and I'm sure glad that it didn't!

[kiwii]

I realize something that is bothering me: the doctor requires me to bring in my machine to the first visit. I view that (emotionally) as a threat and/or at the very least, a balance of power issue.

I am going to take it with me; it is unlikely that I will hand it over to him. I think this issue, especially, has me anticipating that the doctor and I will be in conflict.

[HalfAsleep]

I realize something that is bothering me: the doctor requires me to bring in my machine to the first visit. I view that (emotionally) as a threat and/or at the very least, a balance of power issue.

I am going to take it with me; it is unlikely that I will hand it over to him. I think this issue, especially, has me anticipating that the doctor and I will be in conflict.

You could stay in kid mode and use it to your advantage? Under your breath, like this? “It’s MY toy and I’m not sharing. You can look at it for a moment, I’ll even MAYBE let you touch it, but you have to give it right back.”

My doctor is also requiring me to bring in the machine after 30 days. It’s a compliance thing. It’s about crossing the t’s and dotting the i’s, nothing personal.

IMO anything that has to do with compliance is like having to eat your vegetables. Kid mode. You gotta do it, or you don’t get dessert. Conflict, yes. Can you come out of it with something in your favor? Yeppers, that too.

[kiwii]

Haha, yeah.

I setup SleepyHead on an old laptop and have a thumbdrive with the data on it, which he can use in lieu of the SD card. There is even a folder of my screenshots that I'll be happy to scroll through for him.

Interestingly, even though I've been copying over the data from the SD card as a backup, on two days the contents of the folder did not copy. The data had been picked up by SleepyHead so I was none the wiser. Never thought to check for empty folders (I used the backed up files for the laptop) - glad to have found and remedied that situation.

Fortunately capable-adult-mode is kicking in. Would be nice if it felt like I was in charge, rather than at the mercy of whatever emotions are at the forefront. sigh. Thanks for the pep talk! It helps.

[kiwii]

My solution to this is never to use a specialist, but to direct all everything through my primary care doctor.  My physician originally responded to potential OSA by sending me to an ENT that found not anatomical problem to explain apnea, then scheduled a diagnostic sleep test that diagnosed very severe OSA. Since I did not tolerate the clinical environment well (didn't sleep well), I was prescribed auto CPAP and self-titration.  I retained copies of my diagnostic study and prescription and have never had a subsequent sleep study.  I have changed doctors several times, but informed them I wanted them to also manage my sleep apnea. They have annually reviewed my use, how I feel, and I print a summary report showing usage and AHI. That has been sufficient to update prescriptions for equipment.

If it ever became a hassle, I would just buy my own stuff.  The fact I get 100% coverage is the only reason I currently stay "inside" the system.  Find a doctor that listens and works with you.  That should be a basic requirement for your primary doc.  If you need a specialist, define what you need and don't let that scope of services increase without a good reason.  Bring it back to the primary ASAP.  If a doctor does not understand he is basically a contractor retained to solve a problem with you, then that might be the wrong guy.  There is a place for the physician that takes control and is unrerceptive to your input, but sleep apnea is not where that attitude belongs.  This is about treating obstructive and central events, and collaborating to find comfortable effective therapy. If you have made the effort to become informed and an active participant, the doctor should appreciate and use that asset, not suppress it.  I have had physicians try to pull that crap, and I never saw them again, and let them know why I would not be returning.  I really like my health team and we work together.

I was re-reading this just now. This is what I am aiming for (thanks to your suggestion; would have never thought of it on my own)... although I want a specialist to 'get me started' and for the possibility of having an overnight sleep study. It doesn't look like I'll need the study though, but I'd still like one at some point.