Newcomer

[PlumeAgate]

Hello. My name is Hannah and I'm an eplieptic. I was diagnosed with TLE when I was five and I imagine I've had every kind of seizure there is at least once. I've been off and on different medications almost the whole time since my diagnosis, but luckily, a few years ago, my neurologist started me on Keppra and it's kept it pretty well under control, only letting them through every few years when I get too adjusted to the current dosage.

My last seizure was at the end of May of last year, and it was the first grand mal I've had in six years. It's still upsetting to think about, going so long without one and then it just comes back to bite me. Worse yet, I hit my head on the bathtub and got a concussion, marking my first injury from an external force during a seizure.

I've come here to swap stories and get others perspectives on my experiences who have actually experienced the same things.

This feels like some kind of cover letter, which is funny since I can't bring myself to write one when I need to.

 

[N Sperlo]

It should feel like a cover letter and an intro to a 12 step program. "My name is Hannah and I'm and epileptic".

Welcome Hannah. I don't mean to poke fun, but it made me laugh. You'll find a few of the members on the forum have had some external force injuries during a seizure.
After years of being seizure free, I had my first tonic clonic seizure (that I know of) while I was sleeping. Really sucks to have it all go down hill after years.

There will be plenty to talk about because everyone here has a story.

Welcome.

 

[CathyAnn31]

Hi Hannah, welcome to CWE. Lots of stories to swap here. Feel free to dive right in.

 

[Nakamova]

Hi Hannah, welcome to CWE!

It's no fun any time a tonic-clonic hits, but there is something uniquely nasty about a sneak attack after after 6 years without. If you want to share war stories and battle scars, here's a lovely thread to visit:
http://www.coping-with-epilepsy.com...injury-youve-suffered-grandmal-seizure-12692/

 

[Belinda5000]

Hi Hannah welcome to the board.Sorry to hear u had a tonic clonic last may.
I'm on my 23rd AED after going over all them.my mother calls my seizure stories war stories. I was diagnosed when I was 2 and I'm refractory.

Belinda

 

[pccoder]

Hi Hannah. Looks like you joined this website just before I did. Also looks like you're hoping to find something similar to myself. We've both gone many years with no seizures and then wham! I find it unbelievably frustrating, as I'm sure you probably do too. I'm really sorry for that.

I was just talking to my dad this afternoon and mentioned how, at least here in the USA, our medical community doesn't seem too interested in curing diseases. Instead they just want to treat symptoms. I, too, was taking Keppra for many years (8 actually) with no real issues to speak of. However; now it seems that I'm having to switch to a new medicine. I also find that these medicines for Epilepsy all have one thing in common (at least it is my perception), which is that even when you find one that works; it has an expiration date. Eventually they all seem to stop working and force you to switch to something new.

I'm definitely interested in what you learn on this site. And I wish you the best of luck.

 

[kashani19]

Hi Hannah! I have a daughter 8 years old who was diagnosed with epilepsy 2 years ago. She is currently on Keppra. Keppra is the 3rd medicine they have had her on and the best really. Although, they are getting ready to wean her off the meds due to no seizures in 2 years. I am terrified! She does have aura's frequently, but none of them turn into seizures as of yet. She had them before her first seizure as well, so you can see why I am so worried. I think the Keppra keeps seizures from happening, but the aura's still happen.
I look forward to hearing more about you and being on Keppra. It gives me relief and keeps me calm to read other stories on this site. And it gives me so much knowledge that I never had before, so welcome!

 

[PlumeAgate]

Hi Hannah! I have a daughter 8 years old who was diagnosed with epilepsy 2 years ago. She is currently on Keppra. Keppra is the 3rd medicine they have had her on and the best really. Although, they are getting ready to wean her off the meds due to no seizures in 2 years. I am terrified! She does have aura's frequently, but none of them turn into seizures as of yet. She had them before her first seizure as well, so you can see why I am so worried. I think the Keppra keeps seizures from happening, but the aura's still happen.
I look forward to hearing more about you and being on Keppra. It gives me relief and keeps me calm to read other stories on this site. And it gives me so much knowledge that I never had before, so welcome!

I can relate to her aura thing. If I get too stressed out and haven't eaten or slept well, sometimes I feel like I'm having an aura, but my seizures throughout my life have been so spaced apart I'm never really sure until I have a full seizure. But there have definitely been times throughout the past couple of years when I knew I should be having one, and if it wasn't for the keppra I would have.

 

[arnie]

Welcome! You will find this is a good place to hang out and, as you said, swap stories since we all have our own journeys and experiences with epilepsy. Enjoy the time you spend here, and I hope your tonic-clonics don't return!
I've only had 5 tonic-clonics, and for the first four I was in bed, asleep, and the fifth one hit when I was doing stretching exercises on a yoga mat on the floor, so no falling! I only have simple partials now, and I don't lose consciousness with them, so no damage there either. Knock on wood!
See ya around.