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#21 pinklady72191

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Posted 30 January 2015 - 08:10 AM

I was on no meds to have to wean off, purpley. I haven't been on any of the antidepressants for at least a year. Only medicine I take daily is Yaz.

#22 Jai

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Posted 30 January 2015 - 12:20 PM

Pink,

 

I wanted to post this for you. You are sleepy.   A  8.5 SL falls in the IH criteria.  I hope this helps.    

 

 

The diagnostic criteria of idiopathic hypersomnia in the revised edition of the ICSD, in addition to the clinical criteria, which are similar to DSM-IV-TR criteria, include 1 or more of the following polysomnographic features[2] :

  • A sleep period that is normal or prolonged in duration
  • A sleep latency of less than 10 minutes
  • Normal REM sleep latency
  • A sleep latency of less than 10 minutes on the Multiple Sleep Latency Test
  • Fewer than 2 sleep-onset REM periods
‚ÄčI am glad your doctor is treating you and that Provigil has helped.  I don't know if an IH dx will help w/medication reinburment in the future, but it may help.  
Thanks for keeping us posted.


#23 Jai

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Posted 30 January 2015 - 12:45 PM

Nuvigil worked for me right away and I started doing a lot more than usual.  I was told, "Lifestyle adjustments- sleep/ wake schedule, stress reduction, diet and exercise- are the cornerstone of management."  This has helped me and I try to cut myself some slack.  I will finish things eventually.  I have slowly increased my dose since starting in May.  

 

I also wonder why sleep clinics do not have patients finish all 5 naps.  I understand if someone meets the critiera w/in the first 4 naps,  then stopping at 4 is appropriate.  Why stop at 4 when the criteria has not been met yet?

 

Do you and/or your insurance have to pay more to have 5 naps?

 

Is it that the sleep clinic has to pay their employees to stay later?

 

I feel that if you are  at a MSLT and you are willing to stay then why not complete the 5th nap?  It could add more information to the results.  



#24 pinklady72191

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Posted 30 January 2015 - 01:33 PM

That's my thought as well, especially since it took so long to fall asleep on the first nap. If I had been asked to stay for a 5th, I would have brought my sleep latency time down. I know this for sure, because after the test was over, I drove home and napped. I'm not sure why they decided against me staying, I would hope that it isn't for monetary reasons. Maybe they did think I met the criteria at 8.5 mean sleep latency. Who knows, really. The "what if's" never do well for me, so I try not to dwell. I'm just *trying* to look ahead, at the blood work and further tests. And in about a year, I'll have a second PSG/MSLT combo, unmedicated, to assess whether my nonexistent medical condition is getting worse or better. By then, I'm sure I will have had every lab test known to mankind, so there will be nothing left to check.



#25 purpley

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Posted 30 January 2015 - 01:38 PM

They just stopped at four because the guidelines say you have to have at least two SOREMs to be diagnosed with narcolepsy, so if you haven't had one in the first four, they let you go because the highest number of SOREMs you could have with an extra nap would be one.  Not a monetary thing, just math.  It's all pretty arbitrary anyway.  Hopefully someday they'll have blood tests to catch most cases of IH and N so people won't all have to go through all this to get diagnosed.



#26 crumples

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Posted 30 January 2015 - 11:12 PM

They just stopped at four because the guidelines say you have to have at least two SOREMs to be diagnosed with narcolepsy, so if you haven't had one in the first four, they let you go because the highest number of SOREMs you could have with an extra nap would be one.  Not a monetary thing, just math.  It's all pretty arbitrary anyway.  Hopefully someday they'll have blood tests to catch most cases of IH and N so people won't all have to go through all this to get diagnosed

 

My MSLT was stopped after four naps because of no SOREMs, and they said it was pointless to do the 5th because they were looking for at least 2. But I have cataplexy...so it's pretty clear that this test is awful. 



#27 Della The Red

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Posted 31 January 2015 - 05:28 PM

same here Crumples.

 

I could  not nap at all in the MSLT - oh in the first one I apparently fell asleep for 30 seconds. I have a cervical spine condition which stops me from lying down so yeah, after the next two naps failed, I went home.

 

thankfully, on the strength of my C and the fact that they caught a microsleep or 2 on the tests before I went to be the night before, I was diagnosed and started treatment.

 

oh the joys!



#28 crumples

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Posted 05 February 2015 - 01:08 AM

I left my MSLT very frustrated thinking that I was never going to get any help, but I think I got lucky and have a good doctor. 



#29 purpley

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Posted 05 February 2015 - 08:56 AM

MSLTs are ridiculously unreliable. I think if someone has cataplexy the diagnosis is obvious. Unfortunately they don't have an diagnostic test for cataplexy. If treatments for narcolepsy weren't all controlled substances, no one would care about this stuff.

#30 crumples

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Posted 05 February 2015 - 12:46 PM

One of the things that concerns me the most is when I read on these forums what other doctors have said (like "well you don't fall asleep mid-sentence," etc.). It seemed to me that within minutes of talking to me and asking me questions my doctor had a pretty clear idea of what was wrong. It's very scary to me that so many doctors seem to misinformed or uneducated.