Need feedback! I'm a newbie!

[cnoons]

Hello, all! I'm not sure if I'm using this correctly, it's my first time on any type of forum. To start off, I'm 21 and living in Chicago. I thought my seizures were a part of my past so I could move out of my parents house and start a fresh chapter, but I guess they threw a curve ball and came back.

I've had what doctors call "tremors" in my left hand since I was twelve. Some doctors claim this was due to repetitious behavior (I swam a lot and played trombone). When I was 15, I fell off a bus and remained conscious during a 3 minute seizure on the ground. I blacked out towards the end and was diagnosed with epilepsy. I had seizures during sleep, up to 7 a night, on and off for about a year until medication (Depakote, Zonagram, Topamax, etc.) slowed them to just hand tremors.

I had thought my seizures were over until about a week ago (9/08/09) when I had a hand tremor that evolved into a seizure on a very busy street in front of a crowd of people. I was fully conscious during the 2 minute seizure, which led my neurologist to believe it was a pseudoseizure. Currently on 200 mg Topamax. I've been getting terrible headaches lately as well. My hand tremors are getting worse and every time I get one, I freak out because I think it's going to be a seizure.

I don't know how anyone else feels, but I was really embarrassed when I had my seizure. I know I shouldn't because I can't help it, but none of those people that crowded around me know anything I've accomplished. They'll walk away, jump on a train and tell their families that night that they saw some girl on Michigan Avenue have a seizure. I'll forever be "some girl that had a seizure." It's humiliating.

ANYWAY, I'm writing to ask anyone on dietary restrictions that have been helpful with seizures, particularly pseudo seizures. I've read up a lot on gluten-free diets and lactose-free, but I would like to hear others input. I've heard some others speak on Atkins and high fat diets.

If anyone is out there and I actually posted this correctly, and anyone knows anything about what I'm talking about, I'd really appreciate some feedback. I don't know anyone with epilepsy or hand tremors. I'd like some company.

 

[epileric]

Welcome

I think you've found one of the best epileptic sites there is.

First off, your neurologist should consider that quite often during a seizure we think we remember it all but we don't. Doesn't it make sense that if we don't remember it we didn't know we missed it? I found that out recently when someone was able to tell I had what I thought was a tiny seizure, usually nobody knows the dif. When I asked how she knew she said my head was pulled. I know that happened to me as kid but never knew it still happened & I had no memory of it.


As far as diet goes, check out these postings in Zoes corner. http://www.coping-with-epilepsy.com/forums/f39/

There are some people here who use diet to control their epilepsy, I"m sure you'll be hearing from them soon. Meanwhile make yourself at home & check the place out.

Also....... so cool that you live in Chicago, I love the Blues!

 

[RobinN]

Huge fan of nutritional changes.

I am not sure that your doctor is correctly informed about seizures. Many remain conscious during a seizure. There are so many different types, no two look a like.

My daughter tried meds, and had horrific side effects without any seizure control.

We are using nutrition to raise Rebecca's seizure threshold. I am a huge fan of it. We began on a gluten free, casein free, corn free and soy free diet. It isn't 100% adhered to. I have a teen that challenges it occasionally. I think that there is a lot of similarity between the diets. What I have read is that the GI tract is inflammed and you need to heal. The body can be sensitive to gluten, and dairy, the other two are similar proteins, and can cause problems too.

The Atkins obviously doesn't eliminate the dairy, however I did get some information that they do suggest reduced amounts of refined carbs, and an increase in complex carbs. There are similarities between many of the nutritional approaches. Certainly can't hurt to try it. Just know it isn't a quick fix. Worth the investment of time though.

Sorry to hear about your public seizure. My daughter has tonic clonic seizures at her school in front of everyone, so she understands your feelings of embarassment.

Really glad you found us, take a look around and feel free to ask more questions.

 

[Bernard]

Hi cnoons, welcome to the forum. :hello:

Many members here (including my wife) are using diet to help control their seizures. The good thing about the diets is that it's easy to experiment and see what works and what doesn't. Just keep a journal to track any changes (for better or worse) in your seizure activity.

Some of the diets really require medical oversight, others you can try on your own. There is a lot of information posted in the forum. Feel free to jump in and ask questions.

 

[Meetz1064]

Hi there

Mr B is right. There are a lot of us that are using diet to help control our seizures. I am also one of them. I've been using the GARD diet--up until a few months ago, when I was diagnosed with celiac disease. Now I'm on a much stricter diet, which is very similar to the GARD, and my E is still under great control.

Also, I wanted to welcome you to CWE. Mr B has built us an AWESOME home here, so feel free to kick up your feet, and just hang out, make friends, and absorb all sorts of information in the Library and Kitchen. The Padded Room is great for venting when you need to.......

Take care.

Meetz
:rock: