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rmosher2

Narcolepsy & epilepsy

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

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

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

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.

Re: Narcolepsy & epilepsy

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

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

Re: Narcolepsy & epilepsy

Hi Michelle,

Oh wow, sounds like my doctor. When he gave me the diagnosis of Epilepsy (JME), he actually said "Wow you lucked out; we haven't solved your original problem but we have found a new one (they always thought they were dealing with the same problem)".

I can def relate (I don't have narcolepsy, but I have two neurological issues concurrently, one of which is still being investigated). Both are supposed to be highly hereditary, and my family doesn't have them--I'm not adopted either, cos my parents have been trying to find the family link to see if it would help! We only know that my grand-aunt had epilepsy, but that's quite removed genetically speaking. 

Thanks for sharing! I feel better now (sorry I don't mean to be mean) knowing I'm not alone.

Re: Narcolepsy & epilepsy

I was wondering too if I might be both Epileptic and Narcoleptic. I have been diagnosed with Epilepsy but do experience signs that may be indicative of Narcolepsy. I actually just completed the 24 hour EEG to try and locate the origin of my seizures and I am curious if the doctor would be able to spot Narcolepsy through that test. I did nod off countless times during my EEG. Will it be obvious?

My symptoms are:

Excessive Daytime Sleepiness

Nodding off frequently (in the car, while watching TV especially action)

Spaciness (feels like I am just not there most days)

Cataplexy for example a little after my daughter was born I woke up unable to use my legs at all but the doctors could find no reason for it (they did not try an EEG or anything)

Suddenly dropping items I was holding or seeming to fall asleep while standing such that I almost fall down

Sleep paralysis

Irritability and depressed mood

Placing items like the milk in the cubbard and not remembering doing it

Hallucination right before falling asleep and right upon waking 

Sleepiness after drinking caffiene

 My grandma has Epilepsy and also was always randomnly falling asleep and passing out

My daughter is almost 3 now sleeps through the night in her own room, my house is quiet, I get my 8 hours but I am still exhausted and nodding off/zoning out constantly its extremely disruptive!

 

Is Narcolepsy something I need to mention to my doctor? Or will they make the connection with the EEG and symptoms I've given them? My husband wants to deal with the Epilepsy now since I am being evaluated for surgery should I not think too much? 

 

Re: Narcolepsy & epilepsy

i notice I often feel and am told that I exhibit many of these characteristics.It's scary yet it's true. Wonder if meds are exacerbating some symptoms . What's the tradeoff ?

Re: Narcolepsy & epilepsy

I have both. I was just told I have Narcolepsy last week. I am almost glade I do it means they at least know whats wrong. I am 20 years old and going to college and have a job.  I dont remember the last time I was not sleepy tell I took nuvagil. I have taken it for 3 days now I can hardly discribe how amazingly happy I was to be awake for the first time in my life it felt like. I know I am lucky compaired with some of you guys. I only have simple parial seizures that for the most part are isolated to my face and usually on just the right side and I get warning or (auras) before I have them. I also found a medication that works to stop my seizures when I know I am going to have one. I am currently on Kepra and one other seizure medication that I cannot remember the name of. But because I am living in arizona I am going to get a medical mj card so I dont have to be on those. Then I am planning on smoking less and less to see if when I am awake if my seizures dont stop. I am a little worried about that but I really want to be fully alert. My life is so close to what it would be like without my seizures I hope I can work on my Narcolepsy that way too. My insureance called me today and they are refusing to cover the Nuvagil but they will cover Provigal so I hope that works. I just wish I had someone with information to talk to about this even if they where just like me searching the internet and trying to find out all about themselfs too. The doctors down here in arizona I have found are not open minded enough even to let me explain what I have leared. It is there way only compleatly bind to new ideas. Mostly I just feel like there are almost know people who can realate to me. Who understand what it is like to be told to just pull though it. Or why a 12yr old kid would hide when her face twiches even though she had no idea what it was or what is ment. I feel as if I figured out how to servive at the time in my life and now I am trying to learn how to actually realax when most people went the other way. Someone who can tolerate the fact the my brain will just freeze like some peoples do when they take test exept for mine does it ramdomly like I cannot remember the word for a remote one minute then it is the conversation we had 20mins ago. So I guess I am looking for someone to chat with online or just some tips on how to live. Someone who can say "thats happened to me" or tell me there story and I can say the same. Because I dont feel hardly anyone in my life knows what this feels like.

Re: Narcolepsy & epilepsy

Gee, I never get to see a full length movie. Cant go for car rides of much length. Always nodding off despite full nights rest. Let me rephrase that, My body wants to flush out the meds I take so I DO get up frequently at night. ADD/ADHD fill all my waking moments. Such a life.

Re: Narcolepsy & epilepsy

Hello I have both narcolepsy and epilepsy. Just to give a brief backround. I was diagnosed with JME or generalized epilepsy around 12/13 years old and have had off and on seizures ever since. Most of my seizures or grandmal(myoclonic). I haven't had a petite or partial in over a decade. They only happend early in my teens near diagnoses.  Since my teens years.. probably near end of puberty 17/18 I noticed that my sleep rythm was off. I started to develop insomnia. I started experimenting with different supplements like Valerian,GABA,Magnesium, Melatonin, Herbal sleep tea's, 5-htp, and many others. For years they helped with insomnia till I got into my mid 20's and a lot of things did not work like they used too. Around 26 years of age my narcolepsy symptoms really became manifested. I was just exhausting all the time and noticed I would completely crash in the afternoons every day at work. I started out going to my PCP for tests and nothing would ever come back abnormal. I saw a pychiatrist and she thought it was just depression and wanted me on zoloft but I ignored that and kept increasing my supplement doses to mask these issues before the issues became so bad I had to quit work. I eventually got on state medicaid and this is what really helped me get to the right doctors. I casually went to a sleep Dr. just for my insomnia because I never saw one. Had 2 sleep studies and both confirmed I had narcolepsy without catoplexy. I was 28 at this time.  I fall into REM sleep within a few minutes and stay in that stage the majority of the night. Always wake up tired no matter what. This explained a lot. All while I was experiencing these problems my seizures came back. I was actually 3 years seizure free without medications from 23-26 years old. Because I was not sleeping much and so poorly I started to get seizures from the sleep deprivation. Since they have started at 26 again I've had problems getting them under control and all while dealing with the side effects of the AE medications. I started out with zonegran, controlled them well but I also slept well So I believe this was the major reason it worked. I started to develop severe depression and suicidal thoughts though so I had to get off that. I switched to lamictal. Lamictal was very stimulating for me and gave me anxiety and severe insomnia. I could not sleep without trazodone or lorazapam. Because of the lack of sleep I had the most seizures in my life while on lamictal for almost a year. I think it was actually pro-seizure for me even though the Dr. was denying the evidence. Soo then I switched to depakote because the lamictal wasn't controlling the seizures. Depakote worked but again like zonegran it helped me sleep but eventually it's sleep effects faded away and seizures returned after a year. It seemed to also intensify the sympoms of my narcolepsy. Severely vivid dreams and excessively tired constantly. It also led to depression and a lot of weight gain. Because of all that NOW I'am on KEPPRA. I was initially feeling better getting off the depakote but once the KEPPRA finally kicked in the mood issues arrived and continue to get worst. I now understand the Keppra "RAGE". My heart starts pounding with anger for irrational reasons. The doctor tried putting me on zoloft to level me out.. well that made me worse! I ended up getting serotonin syndrome and almost had to go to the hospital. So where am I know after all these years? I'am currently still recovering from serotonin syndrome but the Keppra "RAGE" symptoms are still here and the doctors don't know what to do for me. I have 2 appointments next week. One with a pychiatrist and one with the sleep DR. I'am truly tired of the narcolepsy being ignored and the neurologist trying to treat both at the same time. The epilepsy medications only make the symptoms of narcolepsy worse. Especially depakote. I feel like I have a big decision to make.. treat the narcolepsy or treat the epilepsy? That is the question. Treating just the epilepsy has got me nowhere so far. I feel that if I treat the narcolepsy and get quality sleep the seizures should go away. We'll see...

So I basically have been dealing with narcolepsy symptoms from 17-18 years on. I am currently 29. The most noticable symptoms started around 25 years old. The last 5 years have been hell going on and off medications and just dealing with having both disorders which makes treatment so complicated. My quality of life is very poor and has been that way for too long. I feel that I may have to make a more radical decision soon with my health because the Doctors haven't been that helpful.

 

 

 

"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away" - Rev 21:4