Anyone else with non-epileptic seizures?

[TottWriter]

I had my appointment with the neuro a couple of weeks ago, and she reckons all the seizures I'm having at the moment are dissociative.

I'm currently a little in limbo wondering whether or not I actually do have epilepsy. My first EEG picked up unusual activity which was associated with myoclonic jerks, and those have more or less stopped since I was put on keppra. For ages I was told that the other seizures were a mix of epileptic and dissociative, but I've just started seeing a new neurologist and she thinks that none of the ones at the moment are epileptic at all. I was pretty happy at the time she told me, as it was a real hope of getting things sorted rather than god knows how long mucking about with different tablets, but ever since I've just felt it hanging over me - suddenly, I'm once again unsure exactly what is wrong with me.

I don't want to have epilepsy, obviously, but it was at least something I could understand, and something that other people could (for the most part, at least) understand too. But the dissociative seizures seem to be something that even doctors haven't decided on a proper name for yet - I guess I partly feel like I'm being fobbed off again. Everywhere I go calls them something different. I'm also stuck back in waiting-list limbo while the specialist gets round to sending me an appointment.

There's also that part of me that's now nagging at me, the self-doubt I've always had telling me that I must be making it up, that I'm a fraud. When I first started having seizures a lot of colleagues thought I was putting it on (I have no idea why; it destroyed my life for a long time). I have never tried to have a seizure (and I can't see why, Münchhausen's aside, anyone would want to, given all the negative impacts it has), but I guess I'm just starting to get that fear again that people are going to accuse me of fakery. And while I know that I can't help it, I've even had paramedics shouting at me to respond because they "know I can", since my eyes dilate, even when I cannot move.

You are NOT making it up, you are NOT a fraud. You might find this website helpful: www.neurosymptoms.org

You have unexplained seizures. That doesn't mean they are your fault, any more than unexplained infertility would have been your fault. It just means that the doctors will have to look beyond the epilepsy drugs when it comes to treating you.

sorry, link doesn't work. Try this: www.neurosymptoms.org

Thanks. I guess my more rational side doesn't believe I'm a fake - because, well, I know I'm not! It's just hard, because I've had people accuse me of it before, and that was with a condition people have heard of. Whenever you have a problem that people don't really know about, it gets harder to explain it, especially if there are no external symptoms or medical tests which you can point to.

That website is very helpful, too. It's nice to be able to read something with a bit more detail, because it seems like every medical professional I speak to has a different explanation!

Having non-epileptic attack disorder does not mean that anyone thinks that you are faking your symptoms.

Are your attacks brought on by stress? That might be an explanation for why your colleagues thought you were putting it on, if the attacks tended to happen at times of pressure?

I can usually (though not always) cope with stress quite well; it's afterwards that I would have the seizure. Frustratingly, they used to happen a lot when I went for a break or for lunch. I can mostly see why they were sceptical, tbh, apart from the fact that I almost lost my job because of the length of time I was signed off sick.

I'm not working at the moment, so that isn't an immediate worry for me, but DD is old enough that ideally I'd like to look for a part time job. (Every time I've gone back to full time hours since this started the number of seizures has rocketed up again.) I guess my other concern is that starting a new job I will be more vulnerable to discrimination than if I were already working. I lost my last job while I was still on probation because of the seizures. Mind you, that aspect of it was the same whatever the cause of them.