Sleep Study wearing Mask - does this sound right?

[kitty]

Hi there, I am new to the board! :grin:
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.

[Sleeprider]

Any APAP machine can be set to CPAP mode. It makes no sense to reissue a machine. Under HIPAA you have the right to any results, documents, reports or prescriptions generated by the sleep clinic. Study up on HIPAA and demand the full report.

There are some sleep disorders like UARS that are helped by use of CPAP/APAP. Your frustration to be submitted to a titration study without an adequate underlying Dx is very understandable.

[kitty]

Thank you for your reply Sleeprider. I have never heard of UARS so I will go and read about it. Do you know how soon I should feel 'refreshed' and like I've actually slept when wearing a CPAP? In my mind, if I'm wearing it at night, shouldn't I wake up feeling great if it's helping? Or like some medication, does it take awhile for the CPAP to actually have an affect on you?

[kaiasgram]

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??

Hi kitty,

While home studies are definitely limited, they aren't always completely unreliable. While it is possible to produce a false positive result, it isn't highly likely and two home studies both coming up with the same diagnosis are probably correct. My impression is that home studies are known more for under-reporting apnea than for over-reporting it.

So when I read your second (bolded) sentence, I took 'failure' to mean that you were still feeling poorly, not that you don't have sleep apnea. So based on the two home studies and the 5-week APAP trial, you were scheduled for an overnight titration study at the sleep center. They had you use the APAP because they had already documented that you have sleep apnea. (You could obtain a copy of the results of the at-home APAP machine to see for yourself -- likely you'd see pressure changes. Those pressure changes mean that the machine is trying to respond to some degree of airway obstruction.)

The fact that you were actually titrated during that last test at the sleep center seems to confirm that the sleep apnea diagnosis is real. There is some reason they ended up with a pressure of 9, since the lowest pressure on the machine is 4 and if you didn't have apnea, there would be no real basis for needing a higher pressure.

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??

Technically it's true that you can't rule out apnea when you're using a machine (because you're receiving some treatment even at the lowest machine pressure)-- but my guess is that they weren't trying to see if you have apnea because they already had documentation from the earlier tests that you do. They were trying to see if there are additional underlying issues (like PLMD for example) that aren't captured in most home sleep studies but might explain the lack of improvement. And they were trying to see if they could titrate you more effectively than the at-home APAP trial did.

At this point all we can do is guess about what's been going on, but my guess is that the big issue here is really poor communication from the doctor's office to you about what was going on and why. Your story of what happened mostly hangs together in my mind, but was not well explained to you along the way.

Be sure to obtain copies of everything including your two home sleep tests, the 5-week APAP report, and the in-lab titration study. It's always good to have copies of your medical records and you are entitled to them by law. Should you decide to seek a second opinion, you'll want all that documentation.

The switch from APAP to CPAP does not seem to be a big issue for you right now, it's more the question of the validity of the diagnosis. That's what I focused on in my response. An APAP machine can be set to run in CPAP mode so there's really no need to switch out the machine other than cost management. Which brings up two questions in my mind: First, are you in Canada? Second, does your doctor's office have any kind of financial relationship with the equipment supplier?

Edit: I see that Sleeprider brought up the question of UARS -- reviewing your titration study when you have the report in hand should help you see if this could be relevant. You would see in the results information about RERAs -- Respiratory Effort Related Arousals. Some labs titrate for apneas and then stop titrating the pressure when apneas are eliminated, but for some people there is still airway compromise (aka flow limitations) that affects sleep quality and daytime symptoms. I think the titration report will help clarify if this is something you need to pursue.

And one more thing -- if you are to be using a machine long-term, an auto-adjusting (APAP) machine is ideal. Failing that, be sure your CPAP machine is fully data capable, meaning it records advanced treatment data and not just a count of total hours used. What is the make and model of your current machine? You might actually be able to get some of your questions answered right now with the available software we use to look at our sleep data. We can help get you set up with that.

[kitty]

Wow, thank you so much kaiasgram! Someone just actually 'talking' it out to me has helped me understand a lot more! You are correct, poor communication from the doctors office on what is going on and why. Your response has helped me a lot!

And yes, as to my second (bolded) sentence, the Specialist was saying 'failure' as to me still feeling poorly after the 5 week trial wearing the APAP.

Since it seems the Specialist doesn't want to discuss anything further until my appointment in January, I'll be sure to request to have copies of any of the tests done on me at that time.

The machine I'm using now is from a CPAP company separate from the Sleep Disorder Clinic. It is one the clinic recommended I go to (they had a list of a few, but this one was most convenient for me) and the CPAP company is able to run reports from their office about my machine to see what is going on when I'm wearing it. When I was doing the APAP trial they did tell me I was having 5 and less 'event's per night and that was good because we want to keep it under 5. And just to clarify I didn't switch one machine out for another, it was originally running as an APAP and then the company set it over to CPAP mode and set the pressure at '9' from their end. I would think then I can get the trail and any current CPAP usage reports from the CPAP company.

I cannot think off the top of my head what type of machine I have, I can check when I get home, I want to say it's something like AirRes??? That would be great if I could run data and get some answers on my own!

Thank you so much!

[trish6hundred]

Hi kitty,
WELCOME! to the forum.!
Much success to you on your CPAP journey.

[kitty]

thank you trish6hundred! I am desperate for help as my tiredness is becoming debilitating.

[PoolQ]

some clues in what you have posted
"titrate my machine." - in order to do this they must remote control your machine. This means they can change it to a wide range of settings while you sleep. They do this to find the sweet spot for pressure and if CPAP or APAP works better for you. They should know if you had apnea's and what kind.

I have had 2 studies and both times I was hooked up to a machine and had electrodes on my head, sensors on my legs.

I doubt that the assistant will be able to tell you anything. A certified person has to evaluate the results.

They should be able to tell if you entered REM and for how long IF they have wires on your head.

[kaiasgram]

I didn't switch one machine out for another, it was originally running as an APAP and then the company set it over to CPAP mode and set the pressure at '9' from their end.
Thank you so much!

You're welcome

Well the fact that you still have your APAP machine is promising -- most APAPs are full data machines so hopefully yours is too. Sounds like it might be the ResMed AirSense 10 Autoset (or Autoset for Her). Let us know the exact make and model when you can, and we can help you set up SleepyHead and take a look at your sleep data. Maybe we can spot some clues about why you're not feeling better yet.

[kitty]

Thank you again for all your responses! My machine IS the ResMed AirSense 10! Wow you are good!
That would be great if we can see my data here!