Epilepsy Foundation

I guess I'm lucky because I can tell when a seizure is coming (at least during the day, when I'm awake, I wish I could do the same with the night seizures).  Anyway, I grab a pill when I know one is coming as a preventative, it has worked so far.  What does everyone else do to prevent a seizure? 

I've already been told not to rely on the "pill" too much and fortunately, I haven't had to do it very often (only 4 times this year, so far).

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Hi Rebecca,

Depending on how severe a persons seizures are on the norm, one should always be sure to take precautions. Go to the following page on my blog. I've listed a page full of advice for parents as well as epilectics themselves.

Alex

 

http://epilepsymentor.weebly.com/advice-for-epileptics.html 

    Rebecca, I am glad that you can tell when a seizure is coming on during the day, but myself if/when I have a seizure It will always wake me up. But you know that everyone is different.

             Your friend, Lorne Lee

I know what my triggers are and take my preventative meds and pray they work, otherwise I rely on my Seizure Dogs Advise, if he says no, I just don't go.   So far 3 months and counting, especially since I started listening to him and started VIMPAT.

 

Ed and Boris

Hi Rebecca,

Prior to my surgery, I had multiple Complex Partial Seizures throughout the month.  I do the ordering for my store that is 175,000 sq. ft. in size.  I would feel my seizures come on, when they did I would start on one aisle and end up six aisles away.  I would always hope and pray that they would stop.  They never did until I had the surgery.

 

Susan Cooper

 

Hi Rebecca,

 

I mostly have simple partial seizures, and I can't predict those, although I have learned that drinking a caffeinated beverage,  eating a whole box of candy, eating pancakes or anything with syrup, or getting sunburned (dehydration?) will always bring them on within a couple hours in spite of my medicine. Poor sleep or stressful times at work (like conferences) also tend to bring them on. By taking care of myself and taking my medicine, I can keep them to a minimum. 

However, they have generalized to grand mals 6 times since I started having seizures about 6 years ago.  Therefore, I know that when I have a simple partial, I have to prepare myself for a grand mal.  I am fully conscious and lose no motor control during my simple partials, so when I have one, I find myself a safe place to sit until it is over, just to be sure that if this is a day that I have a grand mal, I will be safe, and so will others around me.

 

I never thought about the taking an extra pill idea, like on the bad days... maybe I should talk to the doctor about that...

For me, when the big one hits, it's San Fran 1910 in my stomache (plus all of the other sure signs I will have a seizure) and I take a Valium as soon as possible to stave it off.  Movie popcorn does it for me, I love it, but I've had to give it up because it set off a Tonic Clonic every time.  I take 750 of Keppra twice a day to control my seizures.  The Valium was prescribed as a fail safe, but only because I can tell when one is coming.  My doctors have also warned me that too many Valium episoides and they will try a different approach.

Rebecca,

Keep away from all forms of corn. Take a good look at the GARD Diet and see what I'm talking about. The "Big Four" is what we need to keep away from. (Corn, soy, wheat & dairy)

Alex

 

www.dogtorj.com 

I never have had that "ORA" That everyone talks about, mine just hit, BAM out of no where. The Neurologist talked about funny smells or seeing spots, or getting dizzy. Even tells me about certain foods that cause seizures, not to ride certain rides at 6 flags or all these other things to look for that could be pre coursers to a seizures. But the freeky thing for me is that I've never had anything to warn me I was gonna have one & the strobe light at the Roller Rink I went to in junior high & highschool never caused them neither did any of that other stuff we've all been told to watch out for. So I'm still confused. One ywould think I should know how to deal with this sort of thing, seeing as how I was born with E.  And I have a question , How can you be " With it " I call it during a Grandmal.  Ya'll all talk about getting to a safe place, like you went there your self. Last Grandmal I had was in 2000 or maybe before then.I still have the Petti Mals, Complex Partials, haven't had a GrandMal recently & pray I don't. My parents were the ones doing all the re arainging & moving stuff out of the way  so I don't hurt me or someone else while I was doing what ever freeky thing I was doing. Then they always say I pass out.
Beth- I think that is what makes E such a mystery.  Seizures can manifest in literally hundreds of different ways.  Of the almost 2000 seizures Nathan has had in the past 3 years, we have only had a handful where he could tell us ahead of time.  Otherwise he is another "bam" kiddo.  He also LOVES playing with video games and strobe light toys!  Go figure he is so fragile a couple extra misquitto bites will set him off into crises, but the 2 things that "universally" cause seizures don't affect him at all!  Of course he is only 6 and is very sensory seeking so I don't think he "focuses" on the game/light long enough maybe for it to trigger seizure before he is off and doing the next thing.  They also are the preschool learning video games, not the fast and flashy active kind (except he can kick my butt at mario cart).  We just smile and nod

Hi Beth.  Yeah. I read that there are at least 20 distinct types of seizures and even these different types act in different ways.  Like I didn't have simple partials till I was 25, and they only affected my language.  I could still play Tetris or walk or cook or hold a sign conversation while seizing, just not speak or understand words.  It's so specialized, it took the doctors months to diagnose me.  But when I was 26, I went into one of these sp and didn't come out of it... when I woke up I found out I had had a gran mal.  I had many more simple partials, but then a year later, the same thing happened again... the simple partial didn't end and I woke up again from a grandmal. And then 4 more times.  So now I just have to act like the worst could happen everytime and be safe and act like the simple partials are an aura, even though 99% of the time I only have simple partials, not grandmals. 

I know it is hard not having a predictor, but I think most  people are like you and don't know when their seizures are coming.  I actually think it is rarer to have a warning first, though some people do.  We're in a diverse community.

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