I apologize up front for the long post but in the hopes of getting some clarification I'm giving the most detail I can on my situation.
I have been completely exhausted for years, I can sleep and sleep and sleep and wake up feeling like I have not slept at all. Have tried so many different vitamins, herbs, supplements, etc, etc....I had a sleep study done about 9 years ago, showed no apnea so they said I had Hypersomnia and I'm the type of person who needs to get about 10 hours of sleep a night. That's all that was done.
So for years I've been struggling, the older I get (I'm 49) the worse I feel, it's almost debillatating. Finally a new GP I was going to this Fall sent me to a Sleep Disorder clinic.
In the last few months I've had 2 'home' sleep studies done because insurance would not cover an 'in facility' one at first. Both showed very mild sleep apnea. The Sleep Specialist I'm seeing told me how unreliable the home studies are and I needed to do a 'in facility' one eventually. After those 'unreliable tests' they hooked me up with an APAP machine and I wore it for 5 weeks to see if I felt any better. She deemed the machine a 'failure' since I felt no better, still extremely exhausted. My insurance would now cover an 'in facility' sleep study & the Specialist said maybe I have underlying issues like I'm not going into Non-Rem or have restless leg syndrome, that the sleep study will show all that. It was also set up for me to WEAR my APAP during the study. I thought to myself 'why?? if it was deemed 'a failure' why am I wearing it during the study, don't they want to see what my body is doing in it's natural state while I'm sleeping??' But figured they are the specialist, I guess they know best.
I was told I'd get a call back with my results since the Specialist had no actual appointments until January and she knows how exhausted I am so will follow up via the phone.
I had the sleep study and the following week received a call from the APAP/CPAP company that I received my machine from. They said they got an order from the Specialist to switch my machine from an APAP to a CPAP and set my airflow (right terminology??) at 9. Ok, fine....buy why??
So I call the Sleep Disorder clinic to find out my sleep study results. They only had me ask my questions to the Medical Assistant and she is the one who called me back with:
"You have no underlying issues, your pressures are set now where they should and Cindy (the Specialist) will go over more in January"
Did my sleep study show I have apnea I asked....
She fumbled on the phone looking up my results trying to find the answer and obviously could not. Said 'well it would be kinda hard to say if you have apnea since you were wearing the machine during the sleep study. We want you to wear it until your January appt. to see if you feel any better'
I said "so if the in facility study couldn't tell if I have apnea because I was wearing my mask during it, am I wearing tje mask at home based off of the 2 home studies I did showing I have very mild apnea?" (you know, the 'unreliable' ones)
she said "yes, the in facility study we titrated your machine."
I was livid when I hung up....I was never told this was a study to "titrate my machine." And why are they basing my treatment off of the 2 'unreliable' home studies?? ARGGGGHHH!!
Since the 'Specialist' obviously doesn't want to talk to me until I pay (literally!) her the office visit in January I'm boggled to know what the heck are my sleep study results? Don't I have a right to know NOW?
Is it true what the Assistant said that it would be hard to know if I have apnea while wearing the mask during the in facility sleep study?? Are they able to tell if I went into non-Rem at all?
I'm confused on why am i wearing the mask?? why did they switch it from an APAP to a CPAP??
So many more questions I have but I think if I have to call again and be subjected to only speaking with the assistant, I might lose it on the phone!
I'm so discouraged.
Thanks for taking the time to read my extremely long plea for some clarification.