New here~ have Epilepsy since age 6

[Marleneemm]

Hello everyone.
My name's Marleneemm,I'm 55,married almost 33 years,no children.
I have had Epilepsy since the age of 6 when I was diagnosed with PetitMal/
absence seizures,after I was dropping things like glass milk bottles and my
mother's china while helping wash the dishes.
What lead me to a doctor's office was a small accident I had at home.
I almost took my eye out on the sharp corner of my desk:

After I was diagnosed I underwent the period of trying to get my medication
straightened out~i took everything that was on the market back then.
In fact I ended up with "drug poisioning"from the doctor trying so many
different medications.

I was taking Valium,and Dexedrine when I underwent my first GrandMAL at
the age of 15,while getting ready for school.
When my mom found me I was on the floor,dressed and I had two rug burns
on my cheeks~and part of my tongue was MISSING!!
That's correct, I had bitten my tongue so bad that I took a piece of it OUT!!
My then doctor put me on a "then experimental drug from France that they
were having great results with~Tegretol."
That was 41 years ago when I added it to Dexedrine and Valium.

I have stopped the Valium, and the Dexedrine in 1977.
I'm on 800mg of Tegretol, 200mg 4 times a day.
No other medication,except my blood pressure meds & arthritsis medication:
Also I occasionally do take Treximet or Hydrocodine for Migraines that I've
gotten since I was 6.

I've not had a GrandMAL since 1986,23 years and counting.
I don't want to risk having or doing anything to mess this up.
I'm heavyset, and doctor's have spoken to me about weight loss surgery.

 

[Crystal11]

Welcome to CWE- there are lots of people here that have great advice, can become great friends and this place has made it possible to cope with epilepsy among people with it.
My twin sister and I have had epilepsy since age 6 as well. We had Absence seizures but was not treated due to premature birth, and fear of medication side-effects. We were born in the military where they could experiment on you without parent's consent. Mom was quiet afraid of putting us on any med at all unless it was something we needed to live. We died several times and the medications used saved our lives- but those meds could be the reason we are deaf-blind and have epilepsy and some muscle problems similar to cerebral palsy. I was given medications Tegretol 200mg as a young teenager and it worked some. But Mom again took me off of it due to fear and my complex partial seizures were "not severe enough" to be on medications that could cause liver problems. If I were more educated about Epilepsy, I could have told her that Carbamazepine/Tegretol is the number 1 medication tried and used for Complex partial seizures. Anyways- I went back to my doctor and got a neurologist and started Tegretol XR 600mg a day as a young adult which helped a lot. My seizures changed from Absence to Complex partial. I don't know if I have Absence still or not. I now take Keppra XR 3000mg and Tegretol XR 600mg a day. These help but I'm not fully seizure controlled and may never since I was not treated when I was young.
Anyways- welcome to CWE and hope you find new friends, lots of information, and support. Many people have unique stories and many people here have lots of knowlege on Epilepsy.

Welcome
Take care,
Crystal

 

[Chris515]

Welcome to CWE Marleneemm! You'll find a lot of great people here, and a lot of great support and advice.

Being on this site has helped me so much, I hope it can do the same for you.

Chris

 

[Marleneemm]

Chriss:
Thanks for the welcome.
I've been dealing with it for so damn long I feel I'm almost an "expert".
I post often on the "Epilepsy Foundation Boards"under the same screen name.
I'm trying the others to also post here~and I want to see all of us talking about Epilepsy
and definately doing something to find a cure.
I don't know how my Epilepsy happened: I didn't hurt my head, I was a full term baby,
there was no Epilepsy in my Biologicial family's background~It's like I was just borne
with it.

By the way, what are some of you hobbies??
My latest "obcession is the HBO show TrueBlood"!!!
You into Vampires??? If so this is the show to watch!!!
I also happen to be one of the biggest posters on HBO's TrueBlood Fan Forum with
over 28,000 posts!!!

 

[skillefer]

Hi Marleneemm! Welcome to CWE. Feel free to chime in, ask questions, or just vent when needed.

 

[Meetz1064]

Hi there

Marleneemm!! :hello: Thought I'd stop in and check to see how you were doing. :banana: I'm sure that you'll find that you like it here quite a bit. :bigmouth: Lots of nooks and crannies to check out here, and lots of friends to make, too.

Take care!

Meetz
:rock:

 

[Chris515]

Marleneemm - it's often hard to know how epilepsy can start. Mine was brain damage during birth. (thanks to the doctor who used forceps) I think it is possible to just be born with it.

I haven't heard of TrueBlood, I'll have to check and see if I get it on my cable provider.

My hobbies... soccer (I call it football) - I love watching it but I'm terrible playing it.

As for TV, I really like The Office, Seinfeld and anything with Gordon Ramsay.

Music - Oasis. I'm one of the biggest fans you'll ever see. I was gutted when they broke up.

 

[Nakamova]

Hi Marleenmm and welcome!

I'm surprised you were on Dexedrine for so long -- that's basically a speed drug, so it ordinarily wouldn't be good with epilepsy. Anyway, I'm glad you've found stability on the Tegretol. Have you ever tried taking magnesium for your migraines? It has helped others here on the site.

I think you're right to be concerned about the effects of the weight loss surgery on your E. Nutrition and metabolism seem to play a big role in seizure control.

Best,
Nakamova