Hi everyone!!

[epi-eoin]

Hi guys,

My name is Eoin, I've had epilepsy (mainly tonic clonic and status epilepticus) for 4 years now. It is currently well controlled due to a pretty heavy regime of meds : 300mg lyrica, 700mg keppra, 150mg lamictal all twich daily and 30 mg frisium (clobazam) at night.

I'm a member of an epilepsy "support group" in my home town but decided to join up here too just to talk with some of you nice people.

The main reason I'm on here is that my new girlfriend has also got epilepsy. She only ever had Absence seizures (petit mal) that consist of her basically zoning out for 14 - 30 seconds. She's been like this since she was a young child and was put on medication for it at the time which "zombified" her. For this reason she refuses to try again and is content to live with it.

My fear is that one day she'll zone out while crossing a road and get run over by a car or bus.... I've been trying to convince her that modern AEDs don't have the same nasty (well not AS nasty... keppra rage turned me into a monster for about a month) side effects as before, but nothing I have said will convince her.

The most recent development in this story is that she has been diagnosed with hypothyroidism. I need to do some research on this but I wouldn't be at all surprised if her seizures were related to her thyroid dysfunction as she has never shown any epileptiform waves on an eeg (which I know can mean next to nothing as it took a 3 eegs catch any on mine)...

Anyway thats my little intro to the reasons I have joined. Look forward to being a part of this nice community.

Eoin

 

[cadsgj]

Epilepsy support group? Your home town? Being a Regina, SK Canada guy, I am pretty darn sure you are not here in my town. If so, you and I would probably have met when you joined the group.

Epilepsy support group, what do you think of it... plus' and minus' would be nice to know about. This idea really seems interesting... anyone else know of any?

 

[QueenieKP]

Welcome to the forum. I am very new myself.

Q

 

[valeriedl]

I usually only have absence seizures. Most of the time I just stay where I am and stare off into nowhere but I have gotten up and walked around the house during them but I've never gone outside, hopefully it stays that way. If I have them in public there's usually someone there with me and I pretty much stay in one place till I come out of it.

I wish I had an epilepsy support group here, that would be wonderful!

Is she part of the support group too? If she went to the meetings she might see what meds people are on and understand what some of the side effects are and that they could be completely different than what they were for her.

Is she seeing a neuro? He could help her understand what some of the side effects are and if they are bothering her too much then she can always change meds.

I'm on keppra now and it doesn't take too much for me to blow up on people. I've gone off on people in stores for doing stupid things, like blocking the aisle with their buggy.

I blew up on one of my friends 3 year old daughter because she was coloring on my coffee table. I was screaming at her so bad and the poor little girl, and her sister, were crying their heads off because of it. My friend kept apologizing and said she'd buy me a new coffee table, the thing only cost $20, if the crayon marks didn't come off of it.

When I finally settled down and realized that her daughter didn't know what she was doing I got her a coloring book to color on. But they ended up having to leave because the girls wouldn't stop crying. I still apologize to her for doing that every time I see her. Luckily she understood it was the medicine that was making me do the yelling.

I'm still on keppra and told the neuro that I'd really like to get off of it and he's trying to find something that he thinks will work for me.

Welcome to the forum! Everyone here is very friendly and right there to help with questions or problems you are going through because many of us have been there ourselves. Glad to meet you!