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Narcolepsy & epilepsy

Sun, 02/01/2009 - 11:09

I'm new here. It's one of those things that I kept meaning to do. But this has been on my mind a lot lately, so maybe someone has some insights.

I'm epileptic & narcoleptic, taking provigil and lamictol (which is also supposed to help me with bipolar disorder). I was taking carbamezapine with good results, except I wasn't functional. I walked around (when I wasn't sleeping) in a complete fog. I talked my neurologist into trying me on other meds, but so far my narcolepsy and epilepsy both seem to be poking back through to the surface (more frequent seizures and crashing at 7-8 pm, even while eating dinner). Is there anyone else around here with both? If so, what has helped?

 

Comments

Re: Narcolepsy & epilepsy

Submitted by donaldawbrey on Sun, 2009-02-15 - 20:29

I can't believe it!  I thought I was the only one with epilepsy and narcolepsy.  And I also take Provigil and Lamictal.  I also take Neurontin for nerve pain.  I have very infrequent gran mal seizures (years apart) and small petit seizures whenever I do something, like reach for a cup then jerk and drop it.  These happen every day.  Every day, at least two times, I get a overwhelming feeling of sleepiness.  Just like I haven't slept in 48 hrs, and I have to go to bed.  I wake up refreshed just to feel the same way again several hours later.  I have gotten in trouble at work, in the past, by sleeping.  I don't drive any more.  There were too many times that I would open my eyes to see a truck coming right at me. I also got tired of people honking at me at red lights when I would fall asleep when I stop.

Well, any way, I thought that it was interesting that someone out there had these two disease at the same time.

P.S. I have two children with epilepsy.  Both on meds.  One controlled.  My youngest has severe refractory epilepsy.  She has had very seizure known to man, but she sure is a beautiful lady.

Thanks, 

I can't believe it!  I thought I was the only one with epilepsy and narcolepsy.  And I also take Provigil and Lamictal.  I also take Neurontin for nerve pain.  I have very infrequent gran mal seizures (years apart) and small petit seizures whenever I do something, like reach for a cup then jerk and drop it.  These happen every day.  Every day, at least two times, I get a overwhelming feeling of sleepiness.  Just like I haven't slept in 48 hrs, and I have to go to bed.  I wake up refreshed just to feel the same way again several hours later.  I have gotten in trouble at work, in the past, by sleeping.  I don't drive any more.  There were too many times that I would open my eyes to see a truck coming right at me. I also got tired of people honking at me at red lights when I would fall asleep when I stop.

Well, any way, I thought that it was interesting that someone out there had these two disease at the same time.

P.S. I have two children with epilepsy.  Both on meds.  One controlled.  My youngest has severe refractory epilepsy.  She has had very seizure known to man, but she sure is a beautiful lady.

Thanks, 

Re: Narcolepsy & epilepsy

Submitted by sleepymom on Thu, 2009-04-09 - 22:58

I have severe narcolepsy, no cateplexy.  My mom has N with cateplexy and sleep paralysis.  My sis has severe sleep paralysis and hypogogic/hypnopompic hallucinations, most likely N.  My 3 year old son was just diagnosed with absence epilepsy.  I also have other autoimmune disorders besides the narcolepsy.  My son was born 3 months premature due to a birth defect of a ruptured intestine.  Absence epilepsy is supposed to have something to do with the thalamus and narcolepsy is a problem with the immune system attacking the hypothalamus. 

I think my family is interesting. We all got N in our mid-teens.  So as soon as he outgrows the epilepsy (fingers crossed) he will get narcolepsy!!!  I also was wondering about having the 2 conditions:  in epilepsy, you want to depress the neurons, while in narcolepsy you want to depress them at night and activate them in the day so wouldn't the stimulants activate the epilepsy?  But it doesn't seem like taking provigil makes you guys have seizures.

My son was diagnosed yesterday.  I think I will have my tubes tied tomorrow, I think my genes are cursed;)

I have severe narcolepsy, no cateplexy.  My mom has N with cateplexy and sleep paralysis.  My sis has severe sleep paralysis and hypogogic/hypnopompic hallucinations, most likely N.  My 3 year old son was just diagnosed with absence epilepsy.  I also have other autoimmune disorders besides the narcolepsy.  My son was born 3 months premature due to a birth defect of a ruptured intestine.  Absence epilepsy is supposed to have something to do with the thalamus and narcolepsy is a problem with the immune system attacking the hypothalamus. 

I think my family is interesting. We all got N in our mid-teens.  So as soon as he outgrows the epilepsy (fingers crossed) he will get narcolepsy!!!  I also was wondering about having the 2 conditions:  in epilepsy, you want to depress the neurons, while in narcolepsy you want to depress them at night and activate them in the day so wouldn't the stimulants activate the epilepsy?  But it doesn't seem like taking provigil makes you guys have seizures.

My son was diagnosed yesterday.  I think I will have my tubes tied tomorrow, I think my genes are cursed;)

Re: Narcolepsy & epilepsy

Submitted by justwantanswers on Mon, 2009-02-16 - 09:03
To be honest doctors are not sure what's happening with me.  Not sure if its a sleep disorder .... possibly narcolepsy, if my blood gases are mixed up, or if it's epilepsy.  I get this wierd feeling hard to explain ... but I feel panicked and in slow motion, my sentences and movements all slow down, I hold my mouth and tongue differently, it feels as if I may drool, my legs feel heavy and weak, I sometimes bite my tongue, I begin to slur my speech so much so that I sound extremely intoxicated, I am fully aware that all this is happening I just can't control it, then I fall into a deep sleep for hours.  Usually 9 times out of 10 the episode is over when I wake up and I am fine.  This seems to occur especially if I am tired or stressed but can occur when excited or just plane coasting fine emotionally.  I have had so many tests, eeg, cat scan and MRI all normal.  I am at my witts end.  I am off work right now because of these symptoms but no one seems to have any answers just more questions and then they send me off to another doctor.  Please if this sounds familiar to anyone elses experience or if anyone has any ideas please post.  I am really feeling rather frustrated and alone in all of this.

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