Sleep study nightmare

[Cpap Scuba diver]

Hello all,

First post on this board, been on a cpap machine now for 3 weeks. Here is my story, I have no doubt that I need to use cpap however, at my sleep study I felt like I was being wired like the house on Christmas Vacation and a scuba mask on my face (my user name is born) I was told not to move and just try and go to sleep....like they where betting on me in the control room. I dont sleep on my back and kept moving enough that I un hooked wires from various parts of my body, they kept re wiring me time and time again. Thankfully they used a ramp up machine on me but when it got to the max pressure, I think around 60 psi or so, my mask acted like it was a hover craft on my face. Again they where in tightning up my mask every 20 min or so. My point is....if I didnt go to sleep that night how did they decide I needed a cpap machine? I had enough, I asked the tech at 4 am if they had enough info on me to tell the doctor what I was doing. They did, so at 4:30 in the morning I went home. I was so up tight that I still couldnt sleep, I went to work only to fall asleep at my desk. Not a good idea around a bunch of mechanics. Oh the tales I could tell.
So here comes the new machine and the fun begins.

So, they have me set at 11 for two weeks and out of the blue call me and talk me through changing the machine to 7, mind you....I didnt tell them of my horrors and they call to change my machine, whats up with that?

Anyone with vast experience on this board.. I would like some answers...maybe even a few lies!

Thanks for your time, and letting me ramble on.

[AuntieNae]

Can you update your profile to indicate what machine and mask you are using? I know you will get a good response if the more experienced CPAPers on the forum here can see that.

[Slinky]

Well, sadly it sounds like you didn't have a very good sleep lab - or at the very least a very good or experienced sleep tech!

Most of us experience most of our events whilst sleeping supine (on our back) and during REM (rapid eye movement) sleep so if we haven't slept on our back during the night late morning they'll come in and ask us to try to sleep on our back awhile. To the best of my knowledge at least 2 hours sleep out of 6 hours bedtime is required to qualify for an OSA Dx. It "might" vary w/insurances tho. From time to time during sleep we might loosen or work off one or some of the leads and they do have to come back in an reattach or secure them. No good connection, no data.

W/o a good mask fit you get a high leak rate and they can't get accurate or sufficient data. However, just continuously tightening an ill-fitting mask isn't the ideal way to remedy the situation either. There's a point where another mask would be the wiser choice. A better mask fitting prior to starting the titration would have been better. Or a switching of masks during the night.

At this point, I would be inclined to 1] request a copy of the full scored data summary report w/condensed graphs (5+ pages) and doctor's dictated results (1-2 pages) from both my sleep evaluation study and my titration study (assuming this was not a split-night study) and the equipment order (script). They are part of your medical records and in the USA you have a legal right to them under HIPAA.

Have they or the DME supplier who provided your CPAP downloaded data from your CPAP or does it perhaps have a remote reporting module? It sounds like maybe this past 2 weeks of usage data is what indicated to them the need to change the pressure setting. We're really only second guessing just what is going on.

Before you've had this CPAP for 30 days I'd be inclined to talk to the DME supplier and understand just what CPAP device I was using. Given what you've told us so far I'd be insisting on a fully data capable APAP (auto adjusting CPAP) set w/a pressure range of 5 cms to 15 cms and access to the Efficacy and Usage data via the LCD screen so I could check my own results.

Since they talked you thru changing the pressure if you can tell us what the procedure was we can pretty much know at least the brand of CPAP you are currently using.

I had a very good sleep lab. It wasn't thier fault in any way but my first titration study I didn't sleep for beans. Only 42 minutes out of 6 hours bedtime. So they brought me back in for a second titration. I only slept 98 minutes out of 6 hours bedtime. (We usually do sleep more than we thought). The two combined gave them the required 2 hours of sleep out of 6 hours bedtime for my insurance and I was provided w/a CPAP. (I didn't have problems w/the tech constantly entering the room to re-attach leads or tighten the mask, etc. as you did. I just didn't sleep!) I knew enough prior to receiving the CPAP to insist on a fully data capable CPAP.

I didn't sleep for beans the first 30 nights on CPAP. So they raised my pressure 1 cm. Still didn't sleep for beans the next 30 nights but there was SOME minor improvement. So the sleep lab doctor ordered a loaner APAP w/a pressure range of 4 cms to 20 cms (which was NOT a particularly brilliant pressure range on his part). That resulted in yet another pressure change and FINALLY I started geting some decent sleep. Not great, but decent. In my case, it was a matter of keeping in touch w/the sleep lab and making them aware I still was NOT sleeping for beans w/this contraption! I had a crappy DME supplier and some mask problems. I finally had to switch local DME suppliers to get some mask exchanges until we found what worked for me.

Moral of the story: EDUCATE yourself. Keep your local DME supplier, your sleep lab and your sleep doctor aware of any and all problems you are having and insist on getting those problems remedied. YOU are the one who endures the benefits or consequences of your sleep therapy. The sleep "professinals" (??) can't help you if they aren't aware you are having problems. And IF they can't or won't help - get rid of them. Good luck!!

[georgepds]

Anyone with vast experience on this board.. I would like some answers...maybe even a few lies!..

No lie, the first night on the sleep test was one of the worst sleep nights in my life. I had to go home and sleep to recover from the sleep test. The next night ( with cpap) was not so bad.

I think bad night in the sleep test lab is a universal experience. It's not like the staff is not aware of the problem. The reason it remains so grim is probably that they don't have to do any better to diagnose the problem

[Slinky]

I wouldn't agree w/that at all. It is not surprising that we don't sleep for the evaluation as well as at home given the wires, etc. but actually I've slept fairly well each of my sleep evaluations. I have NO explanation for why those two titrations were so difficult but I sure wouldn't blame it on my sleep tech. We tried different masks priro to sleep, we switched mask the middle of the second night, there was only the need to come in once or twice to improve a wire attachment, I was allowed to sleep in any position I wanted, etc., etc.

I'm really convinced you had a very inexperienced sleep tech for the titration. Your description of the night makes that quite clear.

[GuyK]

I think bad night in the sleep test lab is a universal experience.

I wouldn't classify either of my nights as bad -- I went into the experience expecting the worst. I'd read that very little sleep happens. I also didn't think that I'd be able to sleep all that well with so many things attached to me.

My sleep study wasn't so bad. I slept about the same way as I normally sleep, feeling like I didn't get too deeply in, and waking up at least once. That one time, I fell back asleep (which didn't always happen at home) and then woke again sometime around 5:30am. After laying there awhile, I decided I probably wasn't going back to sleep. So, I called the nurse and she said she was about ready to wake me anyway.

The titration study was the same thing, only different. I started out on a nasal mask (which I think didn't fit properly). I may have fell asleep, but it only felt like a half-hour or less. I think when they detected I was awake, the nurse came in and switched me to an FFM. That was strange, with maybe some leaking, so she came back in and adjusted it. I noticed getting some of the "chipmunk cheek" effect, and that was okay. I don't think there was a humidifier, and I got dry. At some point, though, I dropped off hard and don't remember anything until she came in at 5:30am to wake me out of what felt like deep sleep. I asked if she got what they were looking for, and the only thing she'd tell me is "we got you all the way up to 15" (I didn't really know what that meant).

Overall, I don't remember it as being an uncomfortable night. I remember at times not being all that deeply asleep and maybe just a bit too aware that I was attached up to a bunch of stuff. They told me they had to get a certain amount of time with me supine, so I stayed that way, but I think I would have slept more comfortably on my side at times. I recall my legs moving quite a bit, but I don't know if that is officially "restless legs" or not.

Guy