Narcolepsy Forum Posting

Posted by Redpath on April 20, 2002 at 11:43:15:

In Reply to: Afew questions from a newbie....... posted by Raindrop on April 18, 2002 at 21:04:09:

Hi,
I was diagnosed with N about two years ago, I have had it since I was 15 at least and am now 29. I am writing this because your experience sounds like an exact match of my own. Here's some briefish responses for you...
You can't have cataplexy without narcolepsy, although 40% of narcolpetics have narcolepsy without cataplexy (so we are lucky in a funny kind of way because we can be certain)
I will describe what cataplexy feels like to me, may be that will help you. I completely collapse with anger or frustration (this can happen with laughter too). It is like a complete muscle weakness and I slump down on the spot. I am then completely floppy and relaxed but my brain doesn't seem to be able to tell my body to move. This passes after about five to ten minutes. I am still completly conscious of everything that is going on around me. Sometimes I feel so relaxed I could fall asleep.
Your nighttime experiences are just like my own as a teenager too. I have very vivid memories of dreaming but knowing it was real. I would run to my parents room and scream at them that something awful was happening to me and of course they said it was just a dream and said I was being silly.
When you have narcolepsy your sleep attributes don't always gel. In this case, your brain is fully conscious and yet your dreams are still continuing (terrifying in practice, but with a fairly straight forward explanation). You were in practice hallucinating.
With cataplexy, the paralysis which prevents you acting out your dreams normally kicks in when you are in fact awake.
I am also in the UK. There is an excellent organisation there callen UKAN. You can find them at www.narcolepsy.org.uk.They have a great site which describes N really well (if you can persuade your family and friends this is the one to send them to).
I went for the first time to their AGM. They are a great bunch of people. Just e-mail them and they will help you with any info you want. They have a complete cross section of ages and backgrounds, all lovely 'cos they have N!
Also, please don't feel like you're not being taken seriously if it takes a while to get a diagnosis. You are! Here in the UK there are about 400 neurologists in total(if that!) If you think that they have to see MS, Alzeimers, epilepsy, brain tumours, Parkinsons....UKAN can help you find out who is the best neurologist to see in your area if you are not too far down the line.
Anyway, good luck. Keep sane and believe in yourself. Keep posting any questions. You're doing great finding this site. It is the best for any questions that you are bound to not ask the neurologist (you get about five minutes and they can be a bit intimidating!). You are at the most difficult stage.
Regards

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