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In Order To Be Diagnosed With Narcolepsy???

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#1 John2785



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Posted 30 December 2012 - 04:53 AM

Hi, I've been researching narcolepsy the last couple days and seem to have all the symptoms. I am worried however that I won't get diagnosed because according to my research the sleep study entails the patient has to take naps every couple hours the day after the night study and people with narcolepsy should fall asleep within 5 minutes??? If I pass all the other tests but don't fall asleep during the naps quickly do you think I won't be diagnosed? I am very tired during the day, show mild signs of cataplexy and have hallucinations upon waking and nightmares every night as well as occasional sleep paralysis. Your imput is greatly appreciated. -John

#2 Pkay



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Posted 30 December 2012 - 06:41 PM

I know a few people through the various communities who didn't show signs the next day and despite that were still given a diagnosis because of EDS and cataplexy. Do not worry about it, be natural. Sometimes people with narcolepsy have good days, sometimes have bad days. If they fail to diagnosis and you feel something, anxiety, stress, whatever may have given a faulty result then talk to your dr again.

from talks with my neurologist it's not how many times you fall asleep or under 5 mins but that you fall asleep abnormally quick and how quickly you enter REM. It's nothing you can control so don't worry about it. Most of the time the next day you're in an insanely boring situation anyways so I'm sure a few healthy individuals would sleep as well :P

just try and relax and let the doctors evaluate you.

The truth is you may not have narcolepsy. It could be another neurological or physical condition and you really don't want to try and fit a diagnosis hoping for a cure as it's entirely possible to be misdiagnosed. Try and stay as normal as possible the day of the test. Don't worry about the results just hang out and watch some TV. If you have narcolepsy/cataplexy odds are a neurologist will eventually diagnose you. It may take time but the symptoms are going to show eventually. I had 2 sleep studies before being given an MSLT and had to do another MSLT because on my first one I had a bad sleep paralysis episode that freaked me out and my blood pressure went through the roof and kept me up all night. It takes time.

BTW: the best thing you could be doing right now is keeping a sleep/cataplexy diary notating everything you can to show your dr.

#3 John2785



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Posted 30 December 2012 - 06:49 PM

I agree if I have it, the doctors should know so I shouldn't stress. Thanks alot for your reply.

#4 munky



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Posted 01 January 2013 - 01:30 AM

Many years ago, I was diagnosed with primary ideopathic insomnia and REM behavior disorder. That diagnosis was made without a sleep study, because my insurance at the time wouldn't cover it. I was only recently diagnosed with narcolepsy w/o cataplexy, after getting in trouble at work for falling asleep--and me arguing that I wasn't, because I wasn't noticing it myself (didn't feel like I was falling asleep/sleeping/waking up).

Let me tell you what my neurologist/sleep specialist said this time.

I slept 7 or 8 hours on the PSG (don't remember how long) with 92% sleep efficiency.

For the MSLT, I apparently fell asleep for every nap, with an average sleep latency (or time-to-sleep) of 8 minutes, and 2 sleep-onset REM periods. This put me, according to the neurologist, right at the borderline for a narcolepsy diagnosis. I don't have cataplexy to tip the scales. However, the neurologist said, in his own words, "After sleeping as long as you did on the PSG, and with that sleep efficiency rating, you shouldn't have been able to fall asleep at all for any of the naps. No one should, if they don't have narcolepsy."

So, yes, test results matter. But so does how your doctor interprets them. The best thing you can do is not worry about it. I went in for the sleep study a little worried that I wouldn't be able to sleep--I never can in a strange bed, like at hotels or friends' houses--but also with a sense of relief that I was on the way to understanding just what was happening. I did some minor research about the PSG and MSLT, and about various sleep disorders, including narcolepsy, but I didn't let myself form an opinion about what the diagnosis would be. I just kept telling myself that this was the first step to finding out what was happening. As a result, I was fairly relaxed about the whole thing. I think that's the best way you can possibly approach it. If you worry too much about the results and whether or not you'll get the "right" diagnosis, you'll affect those same results and, therefore, the diagnosis. So, try not to worry about it. Try to think of it, instead, as the first step to knowing what's wrong and how to fix it. Just take a step back, take a deep breath, and let the worry go.

Easier said than done, I know, but still the best thing you can do for yourself.