How accurate is a sleep study if you did not sleep?

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How accurate is a sleep study if you did not sleep?

Postby justkat_6 » Sat Jun 30, 2012 3:56 pm

I apologize in advance for how long this is!!

I recently did my first sleep study because I have been having issues falling asleep. It was a horrible experience. I arrived @ 9:30 p.m. & was taken to this very comfortable-looking room, then the big fluffy comforter was taken off the bed to reveal a thin hospital bed mattress and 1" thick pillows. After 45 minutes of having the monitors attached I was told to lay down. I started to put the two pillows together (so it would be more like a regular pillow) and was told no, just one pillow, that they could raise the head of the bed if I wanted my head higher. So I laid down on my back (I'm a side-sleeper), with the head of the bed raised so my chin was on my chest. I had asked for a drink of water which the attendant forgot to bring until I was in this position so when I ended up spilling after I tried one drink so my mouth was still very dry. I told her I prefer a cooler room temperature & a fan was turned on. After doing the little tests (blinking, etc), I was told to go to sleep. (I'm envious of the sleep study experiences I've read here where people were allowed to watch some television or even read a book to help get ready to fall asleep). Since my issue has been FALLING ASLEEP, I completely wide awake & laid there looking around in the dark, twitching my feet & back aching from the hard mattress. I would occasionally give a deep sigh & alternately breathe through my nose & mouth. The room would periodically get extremely warm & I'd start to sweat (especially w/ the hot plastic mattress) so I'd ask if they could check the AC & it would cool off again; this happened several times. Finally the attendant came in & said she was going to start CPAP therapy because I'd had "too many episodes." I had never been asleep!! So she immediately tries to shove this mask over my face. I have always been EXTREMELY claustrophobic about things covering my nose & mouth & instantly smacked it away. I apologized & explained how I panic when anything is on my face. So she attached the nasal pillows to the machine & told me to try to put those on. I did try, but could not get them anywhere near my face (especially with the air blowing out of them). She finally determined that just wasn't going to work so I'd "just have to try harder" to sleep. While I was up, I went to the bathroom & got a drink (this was around 2:30) & when I laid back down, I immediately got a leg cramp & had to get back up. She grumpily asked me if this happened often & I told her NO!! So when I laid back down, I asked if maybe I could just have my head flat because the chin on the chest thing obviously wasn't working. So, I laid flat, still trying to recover from the panic attack from her trying to cover my nose & continued looking around the dark room until she came in to "wake me up" at 5:30. She said I had the worst sleep apnea she'd ever seen & the doctor was going to move my appointment up so he could get me on a CPAP machine immediately!!!

When I finally had my doctor appt (which was not moved up), all I was told was I had severe sleep apnea & was given a prescription for a CPAP machine. I explained how severely claustrophobic I was & wasn't sure I'd be able to adapt to a mask & he said he could see that I was getting very stressed just from talking about it so he gave me an anti-anxiety prescription. I never saw my results & don't know what type of sleep apnea I have. I even told him I never slept that night & he agreed that I'd had a rough night. I still haven't bought a CPAP machine because I want to make sure I can tolerate something covering my nose; a friend had a spare nasal pillow that she lent me to practice with while taking the anti-anxiety meds. I've gotten to the point I can actually hold the pillow on my nose (huge progress for me!!), but then, it's not attached to anything & has the big opening on the end so I can still breathe.

The doctor told me to set up another sleep study in 6 weeks (after I'd been using the machine) & the sleep lab has been calling me. I'm wondering whether I should try to have another sleep study done somewhere else & maybe see a different doctor. Another issue I have with this whole set-up is that this doctor is the head of the sleep lab, which is owned by the only hospital in town, which owns the only place to get CPAP machines, and every single person I've heard of who did a sleep study there had to buy a machine. Does EVERYBODY have sleep apnea??? Anyway, any thoughts or input would be appreciated. Has anybody else had such a !@#! experience? I start to panic at the thought have having to spend another night at that place!!! The craziest part of all of this is I have been falling asleep w/in 30 minutes of taking these anti-anxiety meds & have been sleeping like a baby!!!
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Re: How accurate is a sleep study if you did not sleep?

Postby Linda » Mon Jul 02, 2012 1:35 am

Wow, I'm so sorry you had such a horrible experience during your sleep study. What they attempted to do was a split study, which is first test you without CPAP, then test you with CPAP and the mask. But since you didn't complete the second part, called the titration study, they want you to have that on another night.

If I were you, I'd ask either the sleep study clinic or the doctor for a copy of the sleep study results. The doctor ought to go over those results with you, but it's good to keep a copy.

It's not uncommon for them to order you a CPAP machine before you have the titration (sleep study with CPAP), BUT that machine should be an auto CPAP. In fact, it's not absolutely imperative that you have the second sleep study. They can evaluate the effecacy data from the machine (if it's an auto CPAP). But keep in mind, even with having the machine first, it may still be necessary to have the titration, especially if you're having any problems breathing with the machine. You may need a different kind of machine, and that is typically determined during the titration (but not always).

But I was like you. I was shocked to learn I slept enough for them to determine that I had severe sleep apnea. But I had a sleep doctor who showed me the results of my sleep study, showed me the graphs and the numbers that showed how many times I stopped breathing, and what my blood oxygen levels were. That made it easier accepting the CPAP machine.

Not everyone tested has sleep apnea. But often there is enough reason to suspect there is sleep apnea (based on patient comments and maybe blood oxygen levels), so that it's logical that most tested do have sleep apnea.

Are you sure the hospital is the only place to get CPAP equipment? You might call your insurance company and ask what suppliers in your area can provide you with a machine, depending on your insurance (assuming you have insurance, if you don't, then maybe there are some other medical supply places near you or not far away).

Whatever you do, insist that the doctor order you a machine that records effecacy data, and preferably an auto CPAP machine if possible. By effecacy I mean the machine records more data than just compliance (when you use it), but also AHI (apnea hypopnea index, how many times you stop breathing while using the machine), plus mask leaks and more. Auto CPAP machines typically record that. But some straight CPAP machines only record compliance. Make sure your doctor orders effecacy with the machine. They know what that term means. It's a diagnostic tool that all patients should have. Some doctors will only order the basic machine that records only compliance.

My sleep study was horrible too, but not as bad as yours, I think. At least the bed was better!

Let us know what happens.


Linda
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Re: How accurate is a sleep study if you did not sleep?

Postby CrohnieToo » Mon Jul 02, 2012 7:00 am

I would check nearby towns for other sleep labs. And then I would visit in person each of those sleep labs, ask to see the rooms, check the comforts of the bed, pillows, etc. Don't hesitate to tell these sleep labs you visit that you've had one in-lab sleep evaluation study and it was such a horrible experience you really aren't enthused about doing another.

I would FAX or send a request IN WRITING for a copy of the doctor's dicated results (1-2 page) AND a copy of the full scored data summary report w/condensed graphs (5+ pages) from your in-lab sleep study. They are part of your medical records and as such you have a LEGAL RIGHT to copies under HIPAA assuming you are in the USA.
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Re: How accurate is a sleep study if you did not sleep?

Postby Draqur » Thu Jul 05, 2012 7:43 pm

Just because you don't think you fell asleep doesn't mean you didn't fall asleep. It can be very hard to tell if you've actually fallen asleep or not.

When I did my MSLT, I couldn't tell if I had fallen asleep for any of the 5 naps. Basically you sleep all night long then they wake you up in the morning and get you awake/active... Then 2 hours later you lay down for bed and try to nap. Then they ask you if you slept or not and for how long. Then 2 hours later you lay back down, and this goes on 5 times. I didn't "feel" like I slept for any of them. But in fact I slept for all 5 naps. The only clue I could get was when she would get me up, I'd turn on the TV to the news channel to see what time it was. If it was 30 minutes or more past the top of the hour, I knew I had slept. (If you fall asleep, they let you sleep for 15 minutes.. If you don't sleep, the test is over after 20 minutes).

The same goes for all my sleep studies. I didn't know I actually had fallen asleep, when I really did. Its tough when you don't have a clock to look at to reference if you had fallen asleep or not isn't it? They really only need 2-3 hours of sleep data to get a reading on you.
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Re: How accurate is a sleep study if you did not sleep?

Postby greatunclebill » Thu Jul 05, 2012 9:47 pm

as much as people think they don't sleep, they do. it would be malpractice to diagnose you if you in fact didn't sleep. the insurance would never pay for a machine if the doc couldn't prove on paper that you slept and had apnea. my dme got a copy of sleep studies before they would speak to the insurance company.
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Re: How accurate is a sleep study if you did not sleep?

Postby Nightsbadmornworse » Sat Aug 11, 2012 8:26 pm

Your experience (the bad technician), the lack of letting you relax, the scruffier room--sounds like mine..feel free to search for my post. What region of the country are you in? I would complain to the facility or even the board of directors. I do think sleep studies in general are rough in some ways--we already have trouble sleeping-the wires aren't the issue--it's the techs, the noise around the rooms, their manners etc....who can sleep if someone's provoking you all night --...

I'd definitely notify someone.

You have my full sympathy and support. I've had 2/3 bad studies. The facilities need to know what goes on at night without a doctor or two on the unit.
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Re: How accurate is a sleep study if you did not sleep?

Postby DMDesiderata » Sun Aug 12, 2012 12:08 am

This topic was very interesting to me as well.

My primary care physician did an annual wellness exam and recommended that I see a sleep doctor as he thought I had sleep apnea. The sleep doctor he recommended had her own lab and so I went there for my sleep study. The temperature was too hot - I was sweating. There was a door from my room into the next room so every time the technician went into the other room, I could hear every sound. My sleep doctor told me not to take my Ambien, so I didn't. That meant I was laying in bed NOT falling asleep. Lights out was at 11:30 pm. I was still awake at 2:30 am. At 2:30 am, I took my Ambien hoping I would fall asleep. I did manage to get some sleep but I was awake when the sleep technician came into my room because I was disturbed from him going to the other room first.

The sleep center asked me how long I thought I slept. I said 30 minutes. Well, when I went to see my sleep doctor, she said that I slept for 55 minutes. I didn't think that was long enough to diagnose sleep apnea. I wanted to do the study again somewhere else. My sleep doctor said I definitely had sleep apnea and wanted me to do the tritration study next (at her lab). I was not going to do it at her lab. I decided to do it at the hospital which did go better. When I went for the tritration study, the technician told me to try to sleep on my back as much as possible because that was the position most of my apneas were so I did. This time I took my Ambien before going to bed. The result was that I needed a pressure of 11.

My understanding is that insurance requires that you be asleep for 2 hrs to diagnose sleep apnea so how was I able to be diagnosed on just 55 minutes of sleep?
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Re: How accurate is a sleep study if you did not sleep?

Postby Nightsbadmornworse » Sun Aug 12, 2012 12:56 am

Hi everyone,

i really think that there might need to be a separate area for advising around sleep centers and their staff......this thread in particular gives such cogent advice. I have had 3 experiences and the troubles at each center were the techs--the things they said or the way they managed bed time, or a brusk bedside manner....we are vulnerable when we are up late, underslept , on camera, and in our pajamas....plus if they are not hooking things up right or quite right..it's hell to do it all again

Best,
to all.
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Re: How accurate is a sleep study if you did not sleep?

Postby sleepcare » Tue Sep 11, 2012 2:05 am

Sleep is most important to keep fit in life, if you want to stay fit then you have to sleep at least 6 to 7 hrs of sleep a day.
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