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Sleep Study Questions


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#1 Silverfae

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Posted 27 April 2013 - 04:56 PM

Hello everyone -

 

I finally got my sleep study and I haven't talked to the doctor yet, but I just wanted to get some people's opinions here. 

 

So I ended up going in and they were supposed to put me on the latex bed that they have, but wires got crossed and despite me requesting it again when I was there, they just put me on a regular bed.  I have severe back and neck pain that were made much worse by the awful bed and while I fell asleep for a few minutes after 40 minutes of trying, I woke right back up again because of the pain and ended up having to take a vicodin just to sleep.  I started trying to sleep at 10:45 and didn't actually fall asleep for the night until 1:20 am.  I NEVER take that long to sleep, but the pain was too much.  Then I was up at 5:45 for the day.  The test showed no apnea, but at that point I was in excruciating pain and then I had to do my MSLT for the day.  From what I know of my naps, I had the opportunity for 4 naps - during the first one, I had 3 HH's and couldn't fall asleep because the HH's kept jerking me awake (they happen to me more often when I am extremely overtired), but they say I did not sleep at all.  Second nap, I felt I dozed, they say I did not sleep.  Third nap I did sleep, but they showed no REM.  Fourth nap I did not sleep at all as it was only an hour after my last nap and I was still feeling pretty ok.  On top of all the pain, they caught me on the most awake day I have had in a month - likely because I quit my job and have been sleeping whenever I want and as much as I want, but I had days the week prior where I took multiple naps in a day, one being 3 hours long after sleeping for 8 hours that night.

 

I guess my question is this - the tech seemed to indicate that they wouldn't miss N even if I was having extreme pain, and that I would still fall asleep and have REM sleep, and suggested that it might be Idiopathic Hypersomnia - I still think N may be possible, especially given I had no apnea, and I feel that the pain kept me from sleeping.  Do they ever let you try to do it again, or will they just write it off as a no and send me on to the next thing? Thoughts?

 

 



#2 MINItron

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Posted 28 April 2013 - 10:48 AM

Sounds like one of the many, many horror stories of terribly proctored sleep studies. It amazes me that anyone ever gets any kind of diagnosis sometimes. My sleep study was terrible as well, but I can sleep through almost anything, including significant pain. It never ceases to amaze me how many people come back with stories like yours. Where the sleep center simply does not do what it needs to do to make the sleep study successful. I'm not talking about faking results. I'm just talking about making the subject comfortable enough to actually sleep. Then you add to that the often unprofessional behavior of the technicians, and the terrible environmental noise or temperature swings, and it's a recipe for disaster.

 

Sleep studies already tend to be anxiety inducing for many people. Often people have a hard time sleeping just because its an unfamiliar place, and then there's the wires, and the concern about diagnosis. Unfortunately, it is not uncommon to have to do it more than once, particularly if the results are inconclusive. 



#3 lkl

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Posted 29 April 2013 - 05:14 AM

Yes, people often have to have a repeat MSLT, and generally the doctors will suggest this, if they think it is appropriate. I had to do mine twice. My sleep specialist said that the MSLT does not have the power to rule out narcolepsy, and there are often false negatives, especially on the first MSLT. I think it was incorrect of the technician to indicate that you would definitely fall asleep, even with extreme pain, if you had narcolepsy. You may have even fallen asleep for a very short time (if it is less than 30 seconds, it does not count as "sleep" for the MSLT), but the pain woke you again straight away.

 

Good luck for your appointment with the doctor. Hopefully you will get some answers and some relief soon.



#4 Mmartens3

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Posted 29 April 2013 - 03:00 PM

My experience was similar. The bed they put me on was horrible so I could not sleep. And now I have to redo it. I am really frustrated. Why would they not have good mattresses? Why wouldn't they have some soft beds and some firm beds and ask which one you prefer?

#5 Silverfae

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Posted 29 April 2013 - 03:57 PM

I am just worried they aren't going to let me redo my test =/  I wish there was a way I could have a tech come to my house and do it - that would be the best.  My own bed, my own temperatures, smells, etc.  I guess I'll see what they say when I go in to meet with the doc.  All of this is just killing me, now that I feel I am so close to some kind of diagnosis that it might slip away :(



#6 Mmartens3

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Posted 29 April 2013 - 04:27 PM

I know, I feel the same way.i am so close to getting some answers. It would be nice to get a home sleep study!

#7 munky

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Posted 30 April 2013 - 01:06 AM

When you talk to the doctor, be sure to tell him how much trouble you had with the test. Tell him they did not allow you to use the bed you requested, and as a result you were in excruciating pain, which obviously affected your ability to sleep at all. Yes, some people can sleep regardless of pain, but not everyone can! For instance, I have had arthritis since I was six years old, and been in some kind of pain pretty much every day of my life. As a result, I've developed an extremely high pain tolerance--high enough that, several years ago, an orthopedist refused to believe I actually had carpal tunnel syndrome even with the results of a nerve conduction test right in front of him. Pain, as a result, rarely keeps me awake. My siblings, however, have trouble sleeping if they're in serious pain.

 

There are many, many things that can affect sleep, and sometimes they're weird. I had to request that there be no analog clock near my room for the sleep study--which they thankfully complied with--because the ticking will keep me awake. Yet, the dogs can start barking and howling right outside my bedroom window, and it won't wake me up, even if my window is open. The dogs are certainly louder than the ticking of a watch or clock, but the watch or clock will keep me awake.

 

Your sleep study results should not be considered reliable, in this case, because the center did not provide you with what is required to get good results: a quiet, comfortable environment as close to home as possible.



#8 Silverfae

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Posted 23 June 2013 - 09:39 AM

Just wanted to post an update - it took me forever to get back in to see my dr due to scheduling conflicts, but I finally did.  I told him about how much pain I was in and how much trouble I had sleeping - he said there was no apnea and the sleep study and MSLT didn't show anything so my "sleep attacks" were not narcolepsy and were not being caused by sleep problems. 

 

Here's the highlights from my test:

 

Sleep was recorded for 435 minutes, I was asleep for 296 minutes.  It took me 40 minutes to fall asleep and that was only for a few minutes and then I was awake for another 100 minutes.  percentages showed N1 8%, N2 49%, N3 19% and REM 24% - rem latency was 59 minutes.  (Which I assume was from the second time I fell asleep, not the first)

 

They noted soft snoring but no apneas.  I had 21 hypopneas througout the night and my apnea-hypopnea index was 4 events per hour, but when I was sleeping on my back (5% of the night) the index rose to 32 events per hour - the doctor advised me not to sleep on my back. Not on my back I had 2-4 hypopneas an hour.  minimum O2 saturation was 89%

 

no significant periodic limb movements, normal reduction in motor tone during REM,  but not dramatic (what does that mean?) No clear evidence of REM behavior disorder.

 

normal ekg with heartrate between 62 and 116 bpm.

 

For the MSLT, I fell asleep only for nap #3 (I had auditory halucinations for the first 2 that kept jerking me awake which I did tell the dr about) and my sleep latency was 13 minutes, which they said was normal. No REM sleep during that nap, but I only slept for 15 minutes before they woke me up.

 

I am frustrated, but there doesn't seem to be a lot I can do - the dr dismissed me and said I don't have a sleep problem and to look somewhere else for answers about my sleepiness. 

 

 



#9 Ferret

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Posted 23 June 2013 - 10:17 AM

I suggest that, if at all possible, you dismiss the Doctor and find a more sympathetic one who will listen to your concerns.
There are so many variables that can affect the sleep test that, IMHO, it's a miracle that anyone gets diagnosed properly if that test is all that is used. Even a test for abdominal parasites requires a minimum of THREE different stool samples.

#10 Silverfae

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Posted 23 June 2013 - 11:23 AM

I may do that at a later time - right now I've just found out I have bigger fish to fry.  I have severe spinal stenosis in my neck that is damaging my spinal cord and causing me a host of bizarre sensations from the neck down.  I've been blown off by my regular dr for years saying there was nothing they could do for me - turns out they should have been doing something, but because no one did I now need a 2 or 3 level ACDF surgery =/  Once that's over I guess I will see how up to dealing with all the doctors I am still.



#11 Ferret

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Posted 23 June 2013 - 11:37 AM

I sincerely hope that the surgery goes well for you. Best of luck!



#12 The Dreamer

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Posted 01 July 2013 - 07:22 PM

I have sometimes wondered if the fact that I broke my foot a 3 weeks before my MSLT, affected my MSLT results.....though the fact that they didn't tell me to discontinue any medication prior to the MSLT and I had heard that some of the ones I was one can effect the MSLT outcome, though none that my doctors would admit to.

 

Plus, i was actually getting the best sleep I ever had in my life....the week before the MSLT to a couple weeks after the MSLT....as if my broken foot had signaled that I needed to sleep great for a while....I was also having less trouble with EDS pretty much immediately after I broke it to about when my sleep got bad again.

 

I had broken it by walking into a first aid box that was laying on the floor/wedged into corner next to the coffeemaker....

 

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