4 replies to this topic

[peters]

I thought it was either one or the other. cant find any info on the web anywhere. not sure what to think. wasn't some run of the mill doc either - she was from the university hospitol - not the student either, she was the regular doc. back 12 years ago - they said epilepsy - 2 years on tegretol and i said enough of that. imagine my surprise this year went to a doc this year that said narcolepsy. sent to university hospitol....she leaned over and said you do have N and you have epilepsy...WHAT... how about you have N and have to watch your diet, or you have N and stop smoking, or you have N and whatever. the look on my face had to be one of shock. anyway this is my first post so i'll stop here. please don't kick me off and send me to E message boards. i've laughed reading your posts and i've been moved to tears from some.

[peters]

i thought maybe i could get some advice on this subject?
am i the only one on the planet that has this?
is there a correlation between the two ( narcolepsy and epilepsy)?
does one effect the other?
medications?

yes i know these are questions to ask the doc but i thought i could gather as much info as possible. i know what my life is like. yep its been difficult, i wish i would have pursued things further 12 years ago when they said it was epilepsy but i wasn't interested then at age 20. now 34, and i want to learn, i want to take charge, but i'm getting zilch! the only books i've found were "sleep disorders for dummies" and "feeling dizzy"

i know people like us get frustrated. i'm there, peters.

[luckychi_3]

My neurologist after finding out I had the narcolepsy with cataplexy.he did admit in the hospital for 4 days and had all kinds of wires hooked to my head, checking me for epilepsy, all the tests came back neg. for it, but since I was having these black outs, and zoning out periods quite frequently , and the catapletic attacks, were frequent, as well. So no it is not crazy, and the way my doc. explained it is very common that you could have both. But do you have cataplexy with your narcolepsy? I have been tested for all kinds of things, so I know when the doctors want to test you for this and that, have it done, I went for 2 and half years of different doctors different diagnosis, and was about to go crazy!! :roll:

[Helios]

I had epileptic seizures as a kid, due to Tuberous Sclerosis, but they faded. Quite luckily, actually, since I was due for mental retardation in about a year. I do remember reading in literature somewhere that narcolepsy and seizure disorders are somehow related, or at least that some narcoleptics have a medical history involving a seizure disorder.

The TS was a huge part of my early childhood, but I forgot about it completely until high school when I started feeling tired all of the time. I questioned my mother about it some, and found out what it was called (Tuberous Sclerosis isn't something an eight year old memorizes), and researched it from time to time. It doesn't really affect my life anymore.

Since my mid-high school years, I started feeling very tired, even falling asleep in class my senior year (ALL OF THE TIME in college). Anyway, after a few years of blind guessing by my doctors (diabetes, sleep apnea) and my sudden realization that paralysis and hallucinations are not normal experiences, I finally went to a sleep doctor who diagnosed me correctly.

I don't know anything about drug interactions between the two, as I just started Provigil (which is worthless) and will get Xyrem in sometime this week. I haven't been on meds for my seizures since I was about eight years old.

Good luck!

[Lais02]

I was just recently diagnosed with narcolepsy. My sister was also diagnosed and I found out my Grandfather had it. What I though might be interesting to you is that my brother has epilepsy. My sister with narcolepsy and him are twins, so your post caught my attention. I don't know much about either to be honest, but maybe there is some relationship between them.

Good luck!