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#1 Ambricha



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Posted 12 March 2013 - 10:31 AM

I was just diagnosed with IH, but did not have a sleep study done to confirm it because the Dr. said he was very confident in his diagnosis. Once I got home I have non-stop been researching information and looking on forums at other people's experiences. When I went to the doctor he took an hour long history, and when he asked about cataplexy, he just asked if I had ever had my legs give out under me when laughing or having a strong emotion...to which I said no. But, now that I'm looking online I realize it doesn't have to be so drastic.
My question is, for the last year I have been having episodes that I thought were low blood sugar. It seemingly comes out of no where, but always when I'm at work and under a lot of stress. My legs dont get weak per se, but I stumble and slur my words. It comes on quickly and only lasts at most 15-30 secs. I have checked my blood sugar after and it was normal per recommendation of my Endocrinologist. I am in the medical profession and have been concerned from the outside looking in it appears like I'm drunk.
Anyways, I did not mention this to the doctor because I didn't it was "sleep" related. I called the office to ask them to tell the doctor in case he did in fact want to do a sleep study. I told them I don't want to be in Provigil for 3 weeks, then at the next appointment he decide he does want a sleep study and I have to get off of the medicine. I was told by them that I wouldn't need to get off of it if he did want one. Does that seem right?
I would appreciate you guys personal expertise :) thanks!!

#2 DeathRabbit



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Posted 12 March 2013 - 10:51 AM

Not really. Anything like Provigil is gonna make it harder to fall asleep, and sleep studies are already notoriously uncomfortable. I suggest a two week black out period of any psychotropic whatsoever before a sleep study, otherwise, the results might be skewed. Some of these sleep techs are horribly misinformed from what I'm seeing others post. One person on here had a sleep tech get mad at him because he/she was not falling asleep and "ruining the test on purpose." But yea, my doctor actually told me that he personally recommends 3 weeks of no meds before any sleep study, so I would say, yeah, at the very least, two weeks of no meds. I know that sux, but it sux more to be told that your sleep study is inconclusive, because then the insurance might quit paying for your meds.

#3 Hank



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Posted 12 March 2013 - 10:56 AM

Either way, a sleep study is the best way to determine what is going on for you. A polysomnogram (PSG- night study) and MSLT (daytime nap study) is the gold standard. Make sure your doctor is fellowship trained in sleep medicine-usually a neurologist. That is different from just Board Certified in sleep medicine, which is often a pulmonologist. Unless your doctor is familiar with Narcolepsy and Cataplexy, he/she will not know what to look for.


I also did not think I had Cataplexy, but I do- I just didn't know it. Once I was pulled over for a minor speeding violation. When I soke to the officer, my speech was slurred and my neck was wobbly. Next thing there was a second  police car and they were searching my trunk- yikes. So, obviously I appeared drunk to them. Everytime I was at the airport and hurrying to the terminal I had a heck of a time. I stumbled and dropped my bags and had to stop several times. I often dropped things in my hands, like a coffee cup. But I never made the connection that this could be connected to my insomnia and daytime exhaustion.


I think you are wise to do your homework and get the right test for the right answers. Starting with the right doctor is the best first step.

#4 TiredAgain



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Posted 12 March 2013 - 04:21 PM

You should defiantly get a sleep study done. When I had it done I wasn't on any sleep meds, but I was on other things and I was able to take them.


I get slurred speech when I'm having a really bad sleep episode. Usually they will hit me without warning, all off a sudden I will feel extremely tired, can't keep my eyes open, brain fog and I start slurring my words. I actually didn't realize how bad it was until one day my sister said I sounded drunk. I'm aware it's happening but I just thought I sounded tired. Eighty percent of the time I continue to function, and sometimes I don't even fall asleep when I can lay down. It can last 15 / 20 minutes, before I start to feel like I can concentrate again.

#5 Ambricha



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Posted 12 March 2013 - 10:29 PM

Thank you for the replies. I did not realize that there were different types of "sleep specialist". The doctor I went to was a Pulmonologist, not Neurologist. I did really like him but if I don't feel like he is looking in to things further at my next appointment I will find a new doctor. I dont feel like the Provigil is doing anything anyways, doubt it will be hard to stop taking at this point. I have dealt with this crap for way too long not realizing that narcolepsy was even a possibility.
It's interesting that others have the "drunk" appearance with their cataplexy. Are there any other people out there who have similar cataplexy episodes that are willing to describe them?

#6 sk8aplexy



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Posted 12 March 2013 - 10:52 PM

I can relate to the slurring words and being sort of clouded over in thought, but it is different and/or more of a continual effect, rather then sudden sort of occurrence.

It is sort of hard for me to consider it the same as, clear cut Cataplexy where it is an all of a sudden flickering or ragdoll effect; but, I can relate to it entirely and would say it can be really hard to pick up on, for myself.  Often I can tell by others misinterpretation or confused looks, perhaps I note my speech also being a bit off.  But, that sometimes feels like there's no trigger besides, perhaps it being cold, or being more excited than I realize.

Simply, I wish the terminology would be broadened regarding, especially Cataplexy.  I hope that's not a selfish thing to say? Such, has for a long while been quite apparent to me, and likely to many others (who learn about it), I'd imagine.?

It just seems that Narcolepsy and/or Narcolepsy with Cataplexy both, all together, need some real updating in the main terminology and perhaps even some sort of scaling of the variations or severity level/s, to do with different intensities and/or effects of the main variable (at times, between such) symptoms. 

Regardless, I do not believe in a 'normal.'  So in a large, odd way, perhaps the above could never exist, anyway/s.?

One day, perhaps, or perhaps not...