The lights are on but nobody's home

[Endless]

Reading all the websites and seizure descriptions, I don't see any that describe exactly this one kind that I have, and that my father had. (My epilepsy seems to be inherited.) One type of seizure I'll have: I'll seem perfectly aware and awake and reasonable and under my own control to others, walking and/or talking (with a blank stare on my face but they don't notice that), but I'll do or say something completely goofy. I'll say a complete sentence that will make sense, but it'll be horribly insulting, kooky, wierd, or I'll do something inappropriate, crazy, etc. To others it won't look like epilepsy, it looks like I'm an insane person, or at best, highly eccentric.

For the purposes of illustration, an example could be telling someone to quit coloring their face so blue - it's ugly. Then later I remember nothing about it. Or taking someone's coat out of the closet, taking it outside and flinging it into the yard, and then going to bed. Later remembering nothing about it.

What the heck is this (got a label?), and does anybody else have these?

The family understands, but how do you explain this to strangers (like the neighbors) in terms they can understand and accept, in one sentence or less?

 

[Nakamova]

Well they sound like complex partial seizures: There are many kinds of symptoms with complex partials, but they include a lack of awareness, and being awake but not fully alert or able to communicate normally. They often begin with a blank stare. You might suddenly stop what you're doing and look frozen and unresponsive. Some people black out totally. Some people have odd changes in their behavior and their emotions. Some start wandering around or running, or act as though they're afraid or angry. Some people strike out or throw things. And most also ramble or mumble odd words that don't make sense. Some people say they feel uncomfortable and undress or change their clothes. The seizures may last a few minutes. People often feel dazed and confused afterwards, and they can have problems talking for several minutes. Since Complex partial seizures affect the part of the brain that helps control memory, most people don't remember anything about their seizure.

Complex partials are very common (more common than tonic-clonics), but as you know, a lot harder to explain. You could say that it's like having a poltergeist in your brain. Your conscious brain takes a brief time-out, and the poltergeist pops out and causes mischief.

You might also ask your neurologist if he has an "official" handout to show folks.

 

[Endless]

As for telling people about why I did the crazy stuff.

My neighbor I'm not as worried about - she's pretty nice and I'm betting she'll understand.

But at work, that's something else. I've been on leave from work for awhile now. I'm told I said some pretty wacky stuff when I was there. People must think I'm either nuts, or something else. No one there knows I have epilepsy, and if they did, I don't think they'd understand. I think it would be met with prejudice and a whispering campaign by some, if not most of the people I work with. There would be a few that would understand, but I'm afraid that wouldn't be the majority's response. Marginally better than me staying silent and them thinking I'm crazy.

I need to figure out what I'm going to do before I go back. I have no idea what the best thing to do is. I suppose there is no one right answer.

Any advice from someone who has successfully handled this with people at work would be appreciated. Especially how you explained it. Or didn't.

 

[Kare]

Hmmmm... maybe its not seizures, maybe you also have another condition, like Tourette's or something like that.

Your post brought back memories of how we didn't even know my son was having seizures for the first few years because we thought he was just goofing off! No kidding - he would go all slack jawed, and with drool a bit and babble... this when we was five years old. He was always the funny one, and we all thought he was pulling our legs. I remember after seeing him 'do one' that I told him to stop fooling around and that he wasn't funny! Thing is, the seizures lated less than 30 seconds and were so minor, we honestly had no idea!

 

[Endless]

If those were the only seizures, I'd say maybe something else would be a possibility. But I also smell weird stuff, have episodes where I don't recognize my surroundings, don't understand what someone is saying (like it's a foreign language), episodes of random intense emotions (fear, euphoria), waking up outside and not knowing how I got there, feeling a hand on my back when there is no one there, feeling ants crawling on my skin, etc.

I thought I was going crazy until my neurologist diagnosed me and told me it was classic temporal lobe epilepsy. He said he was sorry to have to tell me. I said no, thank you. It was such a relief to finally know what was wrong and to have a name for it.

 

[Nakamova]

Yes, all those symptoms are definitely TLE. In terms of telling your colleagues -- is there a human resources person you could talk to? Or is your boss sympathetic? If you want everyone to understand then the best approach is top down. Get a letter from your doctor, print out any educational materials, get a educational DVD, ask if your boss can schedule a brief meeting for you to let people know what's going on. You can't control what everyone will think unfortunately, but if you can be calm and matter-of-fact when educating people that will go along way.

 

[Blackout]

I agree with the previous person. I have no problem telling people I work with I have epilepsy and just do it matter of factly. I don't let epilepsy define me and this has helped others not have it define me either. I have complex partial seizures where I blackout and sometimes humm during them. I'm sometimes a bit embarrassed of the humming but laugh about it with my colleagues.

I think if you share the rest of your life with colleagues and not seem obsessed with epilepsy and explain to them what happens during your seizures and how often you usually have them and that they don't need to do anything it will ease their apprehensions a bit if they have any.

 

[Meetz1064]

I have

to agree with Blackout. Not letting E define your life is an important thing. Not always easily done, but important. And Nak is right, too. TLE is something that can be dealt with, although it may take a little bit of thought in doing so. And complex partials can cause people to do strange things........Talk to your doctor for some suggestions, and see if they can write a letter to your HR department. Talk to your HR department.

And remember, we're always here..........

Meetz
:rock: