pinkpeony

Is It Technically Narcolepsy If...

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Question: Just to be clear, is it technically narcolepsy if you have excessive daytime sleepiness and sleep paralysis but NO cataplexy? Do you HAVE to have cataplexy for the diagnosis of Narcolepsy or just to be on Xyrem? If no, what could cause EDS and Sleep Paralysis besides Narcolepsy?

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Question: Just to be clear, is it technically narcolepsy if you have excessive daytime sleepiness and sleep paralysis but NO cataplexy? Do you HAVE to have cataplexy for the diagnosis of Narcolepsy or just to be on Xyrem? If no, what could cause EDS and Sleep Paralysis besides Narcolepsy?

The most likely things are sleep apnea or Idiopathic Hypersomnia. Sometimes Depression can present these symptoms also.

 

Sleep paralysis is not unique to Narcolepsy. You do not need to have Cataplexy in order to be diagnosed with N.

 

And no, it is not technically Narcolepsy to only  have the symptoms of EDS and SP. In order to be diagnosed with N you need to have experienced 2 SOREMs (Sleep Onset REM) during a MSLT (Multiple Sleep Latency Test).

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The most likely things are sleep apnea or Idiopathic Hypersomnia. Sometimes Depression can present these symptoms also.

What is Idiopathic Hypersomnia? 

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I better go back to my doctor then. I don't have cataplexy. I remember them saying I have Idiopathic Hypersomnia and then they talked to me about what cataplexy was. I said I had cataplexy but I gravely misunderstood what it meant. I get weak in the legs when I see a cute guy but I don't collapse. However, surely they wouldn't diagnose me with narcolepsy just based on a convo?

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I am confused about whether or not you are diagnosed with Narcolepsy. Or is it IH. I am having a hard time understanding this.

 

Did you have any tests?

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I went in for the multiple sleep latency tests. After I did that, they said "You have Idiopathic Hypersomnia." They conversed with me about cataplexy. My diagnosis in my medical records say Narcolepsy. Just unsure how the jump was made. I don't think it was explained well to me. I thought Idiopathic Hypersomnia was a catch all phrase for everyone experiencing Narcolepsy or daytime sleepiness, etc. I think I will ask to see my actual sleep study. Then I will know for sure.

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Question: Just to be clear, is it technically narcolepsy if you have excessive daytime sleepiness and sleep paralysis but NO cataplexy? Do you HAVE to have cataplexy for the diagnosis of Narcolepsy or just to be on Xyrem? If no, what could cause EDS and Sleep Paralysis besides Narcolepsy?

Only about 70-80% of PWN display cataplexy.  Cataplexy alone in often enough to diagnose N, but the current diagnostic method is 2 SOREMs on an MSLT, regardless of cataplexy.  Xyrem is mostly for N with C, and if there's no C you're likely better off without it, given the side effects.

 

IH means they couldn't confirm N, treatment will likely be the same regardless, likely a stimulant.  IH, by definition, means "you sleep a lot and we don't know why".  IH isn't a catchall for N, because N is confirmed as being the cause, removing the "idiopathic" label.

 

If they labelled it IH, you may have only hit REM once, or not at all during your test, and can't, by definition, put N as the cause.

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I agree with you that it was not well explained. Xyrem is generally licensed for Narcolepsy with Cataplexy.

 

You can always request a copy of your medical records and an appointment to review this information so that you have a full understanding.

 

IH is a separate medical condition with overlapping symptoms and treatments. Both IH and N present with EDS but they have different causes for that.

 

Your doctor is the best place to clarify this- anything from here is just a best guess regarding your diagnosis.

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