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Sleep Study Disaster. What Should I Do Next?


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#1 MLH

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Posted 06 September 2013 - 11:36 PM

So, after my first visit with a real "sleep doctor" he was positive the problem was N after talking to me for about 5 minutes.  EDS, HH, SP, not remembering how I got places, etc.  So he ordered a sleep study.

 

I was SO ANXIOUS about the sleep study.  It was really hard for me to be off my meds for two weeks (adderrall.)  My husband had to take a week and a half off of work to be with our kids because I was such a mess.  When I tried to go to sleep that night, I had worked myself into a minor panic that I wouldn't be able to sleep.  It took me about 20 minutes to fall asleep.  (It usually takes me MAYBE 3 minutes, often less.)  The sleep study does show elevated heart rate.  I slept like crap and then woke up at 2, with that feeling that someone was watching me.  And the tech happened to be in the room to tell me to turn over and let me tell you, that was scared me so badly that I couldn't calm down for two hours.  So, yeah, even more messed up sleep.  

 

The next day for the MSLT, I was in a panic.  I felt like I had "failed" the PSG.  I felt like everything was riding on these damn naps.  I fall asleep at the salan.   I fall alseep talking. I fall asleep driving.  That day, I couldn't fall asleep AT ALL.  Again, the test shows elevated heart rate.  It didn't help that (here in sunny LA) something was wrong with the room and it was COLD.  The tech kept having to put a sweater on when she came into the room. She turned on the heat at one point and still nothing happened.  And of course, she wouldn't let me stay in bed.  So I got to crawl into a COLD bed, wiggle around trying to get warm, panic because it was taking so long, panic because I wasn't alseep.  All, of course, while listening to doors slam, people talk, etc etc.  

 

I went in today to talk about the results.  I started off telling the dr that it was NOT an accurate representation of my sleep.  His conclusion is that I "don't sleep well."  Maybe I can try sleep better, more like a log.  I explained normally I DO sleep like a log.  Sometimes my husband can't wake me up.  I walk half asleep into objects.  (I currently have bruise the size of a cantaloupe as evidence.)  His solution:  More Adderall.  Come back in a month.  

 

I got home and looked at the sleep study.  Some things that jumped out at me:

N1 sleep 19.7%

REM 7.6%

PLM index 15.4/hr.

Snore Arousals 9.0/hr, LM Arousals 8.4/hr, Spont Arousals 6.8/hr.  

 

My sleep graph is a mess.  I had one REM period, around 4:45.  (It happened about 30 minutes after I finally managed to get back asleep after being scared out of my wits.)

 

Any thoughts on my next move?  A neurologist?  Fight with current doctor?  If I dont' have N, that's okay.  I am not pushing for something I dont' have.  I just want this problem solved, not bandaged over.  I just don't know how I can even plan a move nto knowing how much of this data I should keep and how much I should toss out.

 

Thanks for any words of wisdom.



#2 ironhands

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Posted 06 September 2013 - 11:49 PM

Had the same problem at mine, and to make it worse, the tech was coming in and out of my room every 5 minutes to fix the equipment for about an hour right in the middle.  I was ready to punch someone.  I don't think it's uncommon to have anxiety issues during the testing, when we go in feeling like there's pressure to get the right results so we can finally be cured!



#3 MLH

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Posted 06 September 2013 - 11:56 PM

Ironhands--What did you end up doing?  Another study?  Were you able to manage your anxiety (and understandable desire to punch people)?  I know that I have read here that people often take multiple studies to get a dx, but as of now the doctor says that there is absolutely no way it is N.  Not that he had any ideas of what it could be.  



#4 ironhands

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Posted 07 September 2013 - 12:52 AM

I had gone in under the assumption I had apnea, and the test showed a 0.0 AHI.  Went back to the specialist, he tried to sell me on getting something to fix my snoring.

 

Thankfully, I had requested a copy of my tests.  They showed a REM latency under 6 minutes, which the specialist conveniently ignored and didn't bother to say anything.  I had to force it down his throat and get him to send me for a second opinion.  That doc saw the results, asked my history, and flipped out on his staff for not recognizing it, or even asking the right questions.

 

So.... basically have to redo everything.  Doing that in a few weeks before getting a proper diagnosis.  I may end up with the same issue as you.  It generally takes me 10-15 mins to fall asleep.  My PSG took 45, with a 2 hour wakeful period in the middle.  My PSG was almost an MSLT, except I slept an hour instead of 20 minutes.

 

Don't let that discourage or worry you - even though my test was very rough, a lot worse than I was expecting, there was some viable data.  So long as there are a few hours sleep, they can work with it.  The MSLT would be the issue, and I'm very concerned I won't be able to fall asleep during it as well.  I warned the doc ahead of time that I don't think I could.  I've spent 20 years forcing myself to stay awake when I'm not in my own bed.

 

What did it say for your REM latency?  Were there recorded SOREMs on your MSLT?  Ultimately though, if you've been given Adderall, they acknowledge there's an issue, and you could likely convince him to switch meds, possibly to one of the vigils or an SSRI/NRI depending on your other symptoms.

 

Did the doc say "no possibility" or did he say "not conclusive"?  If he doesn't know, he could just go with idiopathic hypersomnia, treatment's the same.  Ultimately, getting a firm diagnosis really doesn't matter as much as the relief of symptoms in my opinion.  Since there's no real "cure" or anything, it's just symptom management, and no matter the cause, it's all very similar - stimulants to keep you awake.  

 

The main thing, for both of us, is to do out best to limit the anxiety and just let whatever happens, happen.  As I said above, the label really doesn't matter, especially when there's no cataplexy.  If the Adderall's not working right, tell him to switch you.  If the anxiety is an issue in your life in general, maybe an SSRI would be of more benefit anyway.  They can help balance your sleep, and treat the anxiety and depression effectively.  I refuse to take another, they've all caused me issues, but everyone's different, and it may help you out a lot.



#5 IdiopathicHypersomniac

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Posted 09 September 2013 - 03:39 AM

Do a home study.  There's a way you can do a home MSLT too.



#6 ironhands

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Posted 09 September 2013 - 10:27 AM

I've never seen a home MSLT; just the home PSG with the pulse oximeter.  How would I be possible to check for a SOREM in the home?  I've seen several cheap/simple EEG-like devices on the market, would it utilize one of those?

 

I'm still really freaked out that I won't be able to sleep when I do mine in a few weeks.  If they're only looking for the SOREM, is sleep latency that important, when compared to the inportance of the SOREM?  Basically what I'm asking, is are they going to say "too bad, you didn't fall asleep after 20 minutes, try again in 2 hours", or will they just leave me alone for an hour if I need it, when they know anxiety is a concern?  Obviously a sedative is off the table, anyone have any advice?  I plan on bringing earplugs for sure, since outside noise was an issue during the night last time - I can only imagine it being much louder during the day.  I don't want to end up burning another test, and losing a days pay at work, for nothing, and, obviously, I'd like to get properly diagnosed!



#7 squirrel!

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Posted 09 September 2013 - 10:36 AM

I don't have much advice, except that I brought a small bedside fan- the white n

oise made a huge difference.



#8 ironhands

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Posted 09 September 2013 - 10:39 AM

maybe I can get them to switch on the CPAP, but not connect me :P

 

So I've pretty much decided to make my own software for the commercial grade EEG devices.  Anyone wanna front me the $1k to get the dev kit? :P



#9 IdiopathicHypersomniac

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Posted 09 September 2013 - 11:42 AM

I had a portable MSLT device with three leads.  I was told that whenever I got sleepy to just put it on and lie down.  The machine did the rest.



#10 ironhands

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Posted 09 September 2013 - 12:08 PM

That sounds ideal.  I can't find any info online though.  I'm becoming more and more convinced I won't be able to sleep, even though I'm nodding off right now, after at least 6 hours of sleep last night.

 

How long do they give you to fall asleep during the MSLT?  Is there a cutoff time before they say "too bad, you fail" and throw you out?  Guessing most here wouldn't have that problem.  My typical sleep latency is around 10-15 minutes right now.  I'm confident I'd show SOREMs, but it's unlikely to happen if I can't fall asleep.  Insomnia+narcolepsy make for a great combo :P



#11 IdiopathicHypersomniac

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Posted 09 September 2013 - 01:15 PM

I see you're in Toronto.  I am too.  Who the heck is your doctor?  Just go for the PSG and ask for a couple of sleeping pills to knock you out.  Never mind the MSLT.



#12 3.8jake

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Posted 19 September 2013 - 08:49 PM

I found when I did my second MSLT test (4 years later) at the same facility my "performance" was more what it was day to day as I managed to end up with the exact same day time and night time techs and already knew what to expect so my anxiety was non existent. 



#13 MLH

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Posted 08 October 2013 - 07:09 PM

For the MSLT, my tech came in (half an hour early the first time so that they could all go home early, yay!) and she told me to lay down.  20 minutes later, she said to get up.  Two hours later, the same thing.  And so on.  So yeah, at least for me, it was a "fail" after 20 minutes and get up.



#14 PWN in Texas

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Posted 30 October 2013 - 11:16 AM

I've had an MRI, EEG, PSG and MSLT.  Next on the list is a long term EEG.  They'll send someone to my home, wire me up, set up video cameras and monitor everything for 72 hours.  I have the narcolepsy diagnosis already, but my Dr wants to absolutely rule out any seizure disorders before starting me on stimulants.  Here is a link to the outfit that will run my test, to give you an idea of what's involved:  http://www.globalneuro.net/



#15 Asksuzan

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Posted 05 November 2013 - 01:09 AM

Home study is your best bet