I also have epilepsy

Former Member

As this is my problem, I decided to grant it a seperate thread, for more back story, see "I need support in supporting him"

It comes and goes, I can go for months between seizures, and other times I can have them several times a day.

I don't have the fall down on the floor twitching type of seizure, in fact, when I have a seizure, most people don't even notice, even if they are hanging out with me at the time.

The problem that has arisn now is that sometimes, as recently has been brought to my attention is actually part of the seizure itself, and not a seperate symptom as I had thought, I freak out. I panick. I cry, my wold is coming to an end. I am litterally terrified. I used to think that I was afraid of having seizures, but appearently, the fear is an involenary reaction caused by the seizure itself. (confused yet?)
This scared the crap out of my boyfriend when it happens. I don't want him to be scared. This is something I've dealt with since I was a very small child, it's not going away, and it's nothing I can't handle.
I'm very worried that this is having a negative impact on his health. Any suggestions for things I can do to make this easier on him?


PS I know, we are quite the pair...

Former Member

How well is your epilepsy being managed? Are you under close medical supervision? Is the situation now where you are still having seizures, even spaced months apart, the best the Drs have said you can achieve?

Former Member

Also, do you have a specialist nurse practioner or anything like that?

If you can get someone to explain to your boyfriend about epilepsy, and how it affects you, and how your actions during a fit aren't something for him to worry about it could help a lot.

Former Member

I (had) seizures similar to what you described. When they got really bad, it felt like a battle in my head. It was painful and I would rock back and fourth, saying "no, no, no" as I didn't want it to happen. But it did. And when it was over, I didn't really remember that happening. I kinda remember the pain but not my actions.

When my mum first saw this, she FREAKED. When it was over, I just looked at her and said "what?"

You just have to explain that this is what happens, there's nothing they can do except perhaps leave you till the seizure passes.

What meds are you on? I'm on toprimate/topamax and I haven't had a seizure in a year and a half.

Former Member

GothDetectives wrote: »

I kinda remember the pain but not my actions.

My dad said the same. He doesn't remember falling down the stairs. All he remembers is waking up with a sore shoulder. He also didn't remember trying to get up either time - the second time, he just remembers waking up with sore ankles.

Him being scared is natural - I was scared when I saw my dad have a fit - although I heard him (he was making strange noises) before I saw him.

Former Member

Melian wrote: »

My dad said the same. He doesn't remember falling down the stairs. All he remembers is waking up with a sore shoulder. He also didn't remember trying to get up either time - the second time, he just remembers waking up with sore ankles.

Him being scared is natural - I was scared when I saw my dad have a fit - although I heard him (he was making strange noises) before I saw him.

Yeah for me, I would mainly stay still, cos I was kinda in control of what I was doing, but not what I was saying. However, in control and remembering it afterwards = two diff things.

I had NO idea what I was saying. I knew it was gibberish. I knew it was difficult and sometimes painful to try and talk. I had a code word when I knew I was getting into a seizure. I had to say it quick though, as once it took over, I never knew if I was saying "blue" or "bohn" or who knows what.

Maybe a code word would help you and your bf, and other friends, anonymous one?

Former Member

They never get so bad that I'd be unable to crontrol my language, at least I've never really had the chance to try. The build up to it lasts a few minutes, where I'm in "control" but I'm really really scared, but the actual "seizure" as in, the part that I can't remember, never lasts more than a few seconds.
I know it's natural for him to be scared, and I've always been open with him about what happens, but he still reacts poorly. I don't need a code word, because I have enough of an aura to straight up tell him what's going on, but that doesn't seem to make it any better.

Former Member

It honestly bothers me that he isn't taking it well. I mean, I had people freak out when I had seizures, but that was when they'd never see me have one before. Surely he's seen you have them before?
I don't know what else you can do apart from ask him to be a bit more accepting cos you don't need him weirding out when you have seizures.

Former Member

GothDetectives wrote: »

It honestly bothers me that he isn't taking it well. I mean, I had people freak out when I had seizures, but that was when they'd never see me have one before. Surely he's seen you have them before?
I don't know what else you can do apart from ask him to be a bit more accepting cos you don't need him weirding out when you have seizures.

It's not about how I deal with it. I deal with it fine.
If I ask him to tone it down, all I am doing is to ask him to hide his true feelings and that's not what I want. I want to help him be more comfortable, and help him understand that it's not a big deal.
I'm not worried about his reaction upsetting me, I'm worried about my condition upestting him.

Edited to add:
His reaction is out of concern for my well being. How could I possibly hold that against him?