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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 Kesai-Serris on Wed, 2010-09-29 - 14:37

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? 

 

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

Submitted by woodye85741 on Sat, 2011-09-17 - 20:19
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

Submitted by Sylviarc on Tue, 2011-04-12 - 06:00
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.

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