Narcolepsy & epilepsy

Re: Narcolepsy & epilepsy

Submitted by catsamu on Fri, 2009-04-10 - 12:58

I think this narcolepsy/epilepsy connection is interesting.  For years I thought maybe I had narcolepsy, but all the sleep tests showed that I didn't have it.  The overnight sleep lab showed abnormal sleep architecture, but I never got a good answer as to what that meant exactly.  I had two more narcolepsy tests, the Multiple Sleep Latency Test, and the Maintenance of Wakefulness Test.   I didn't nap at all during the MSLT test.  During the MWT, I thought I fell asleep dozens of times, complete with little dreams.  I felt like I was dozing, then snapping my head back awake.  The test showed that I didn't have any episodes of sleep whatsoever.  Very confusing.  I then had a couple of EEGs and an MRI.  The first EEG showed abnormal spikes on my left temporal lobe.  The MRI didn't show much abnormal at all.  I was started on Keppra, then given a 24 hour EEG, which showed some abnormal slowing.  Based on all this, my diagnosis was seizure disorder with atypical symptoms.  My symptoms were that I thought I was falling asleep all the time, especially while driving, working on the computer, watching TV or movies (especially if they had a lot of explosions for some reason), certain people's speaking voices, or doing repetitive tasks.  I also had a feeling in my stomach before this "sleep" like being on a roller coaster.  After the "sleep" I would feel totally useless, like my head was mired in glue, for about an hour.

I've been on 2000 mg of Keppra per day for a couple of years and hardly ever have any problems.  A few times, but not all the time like before.

Deb

Re: Narcolepsy & epilepsy

Submitted by punkgurlly1 on Fri, 2010-04-16 - 16:56

Hi guys, I am also epileptic and narcoleptic w/o cataplexy.  I was diagnosed w/ j.m.e. at 14 and then had the m.l.t.s at 26 which was postive.  I have had sleep paralysis since high school didn't know what they were until I got diagnosed w/ the N w/o cataplexy. I had 2 other sleep tests in my earlier 20's but not the MLTS.  I had my tonsils removed since my first sleep doctor stated they were large and causing apnea. An ENT also confirmed this.  Sleep never got any better for me and I was actually getting progressively worse w/ daytime tiredness. I have been taking Topamax for the epilepsy for about 10 yrs except for 2 brief trials of trying keppra and lamitcal. I have never had a seizure w/ Topamax just didn't like the brain fog. Went back due to the keppra and lamictal sideeffects were worse.  I currently take Provigil and adderall xr for daytime meds and amrix, trazadone, xanax to help me go to sleep/ stay asleep. Besides the N and E  I also have periodic limb movement disorder and was diagnosed with sjogren's syndrome last year.  The strange thing is everything is herediatary, but no one in my family has any of the above issues or related issues.  I am not adopted, trust me I asked.  I look too much like my mom.  My neuro. and sleep dr. joke that I am just that special that I got the winning lottery ticket in the gene pool of my family.  A chill ran down my spine when I read the other posts because there are others that do truly understand.

Michelle