My Day Out with narcolepsy Part 2

My Day Out. Part 2

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• daud8472
• Narcolepsy
• Cataplexy
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• Daud
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[mamelucoderribado]

I do have some of the symptoms but in a very reduced scale, I can't sleep at night, when I do my sleep is interrupted every 20 or so minutes, and in day I have an incontrolable sleep. Also I have hallucinations, I fall asleep when I stay still, even in a bus or in the tube. And I cant make the difference between dreams and reality in my memory. So I can understand you in many things, good luck mate!!

[daud8472]

@mamelucoderribado Thanks so much for that mate, and all th ebest to you friend.



[roguegirl29]

I've never fallen asleep without warning but I do get very drowsy and during the twilight time (the time in between sleep and wakefulness being the twilight time) I can expericence a bizarre array of sensations: Sometimes I get a sensation of falling, of hearing a guitar in the room when there is none, of hearing various voices, male or female, talking over eachother. And sometimes I wake up and can't even move. I can hear and see everything around me but I can't move a muscle and it's scary.

[daud8472]

@roguegirl29 Yep that sounds like narcolepsy to me :(

[samevie07]

Mohammed have you tried Nuvigil or Provigil? It might not do much for the cataplexy but might take the edge of the narcolepsy.

[daud8472]

@samevie07 Yes mate I have and it did the job at first but after a while it stopped working for me and it also my made my blood pressure high.

[GREALDO21]

do you keep any cards/ID with you so that if paramedics were called they would be able see what was wrong straight away? if you know what i mean. =D

[jonze70]

Do you sleep normal at night?

[daud8472]

@wyattisodd About two hours after a good sleep on a good day!

[daud8472]

@omgitsweeman Thanks man!

[daud8472]

@dylanfer6 Just extremely tired all the time.

[turtlesinNIRVANA]

awwww

[jleer1]

Wow, i didn't know that it can also make you carry on with the task you were doing before you fell asleep. It might be linked to sleep walking. (I know it's different, but it might be controlled by the same part of the brain or something)

[dylanfer6]

What does it feel like? does it feel like your EXTREMELY tired or do you just blackout??

[therosieposey78]

I also suffer from this disease and I'm thankful for Xyrem which keeps my symptoms minimal do that I can still drive and work. Thank you for putting this out there got the public to understand.

This video made cry because this is me too and especially without meds...but also because I'm thankful that I can still function.