Tell me about your epilepsy

So Monday was happening, I was just hanging out working at my computer desk. Next thing I know I’m laying on the floor with coworkers fussing over me and I couldn’t remember a damned thing. One of the fussing coworkers told me I had a seizure, then I was hauled away in an ambulance. They kept asking me questions like, ''What year is it?" and ''Where do you work?" and I hadn’t a damned clue. Eventually, my memory came back, but it took a good 20 minutes. And the nausea was intense.

At the hospital, they did a CT scan with no abnormal results, so they sent me home. I crawled into bed and promptly had another seizure – that’s two in the space of just a few hours. Back to the hospital I went, and I stayed in outpatient observation for two days. According to witnesses, these were the full-out convulsing kind of seizures for 2-3 minutes at a time.

Among the weirder results – my kidney function was abnormal, possibly due to dehydration, and I tested positive for ecstasy. :confused:

Anyway, this wasn’t my first rodeo. In 2013 something similar happened to me while I was on a hike. They took me away in an ambulance, did an EEG then and there were no abnormal readings so they just let me go and said, ''Well, it happens."

Now that I’ve had three confirmed seizures, though, I’m officially diagnosed with epilepsy. I can’t drive for 6 months. My work schedule is going to be all jacked up (though luckily they are willing to work with me/let me work from home if necessary.) They put me on this medication called Keppra, and I was pulled off Wellbutrin which according to my shrink is ‘‘contraindicated for seizures.’’ That really blows me for me personally because Wellbutrin is the only antidepressant I’ve ever taken that works.

So, brave new world for me. It’s scary thinking I could have a seizure at any moment, and I have no warning whatsoever, not an aura or anything like that, that would indicate I am about to have an event. So I am afraid to use the stove, or sit in a bath, or hold a knife, or do a number of other things that might hurt me.

I’m sure there are Dopers out there who have been through this, and maybe have some pointers? Or just commiseration. This has been a truly bizarre experience all around.

Thanks for listening,


Do you live alone? (Ignore if that is NOMB).


Dude, I’m sorry :frowning:

What did they say might cause a test to come up positive for ecstasy (that isn’t ecstasy)?

I don’t. I live with my husband, though he’s at work an awful lot.

They said some OTC drugs can yield that result. They didn’t seem super concerned about it.

My bad - I confused you with another Doper.

Did the dehydration have anything to do with it? I have no idea if that would affect epilepsy or not.


Well, I’m glad to see you back on the boards but it sucks that this is what is happening to bring it about. Having never dealt with epilepsy I have no useful advice. Aside from here, I’d find a forum devoted to the subject. Patient forums are usually the most educational places you can go.

There is jewelry like necklaces and bracelets that alerts someone if you faint, I would look into getting one. Look up ‘fall detection’

Also, welcome back.

That sucks. I don’t have epilepsy myself, but one of my dogs suffers occasional seizures. She just had two two days ago, one at 2:30a, and one at 4:00p. It’s heartbreaking to see, but she snaps out of it pretty quickly.

She has had a total of 10 seizures in the last 19 months, and they tend to cluster together. At one point, it was 324 days between seizures. We’ve done numerous blood tests, the vet doesn’t know what’s causing them.

Epilepsy sucks.
I’ve been having seizures for ten years now, although fortunately I haven’t had a big one since 2009 (I still have what are called “focal seizures”, or what used to be called “petit mals” from time to time). My doctor got me on the right combination of meds (Lamictal and Zonegran). Mine were always triggered by my period, it seemed – every month I’d end up spending a few days in bed. Caffeine was the other.

My advice would be – find your triggers and then avoid them. Keep a diary of your seizures, write down the date and time, and anything you think might have caused them. I’ve found it’s helpful to show my doctor. And I second a medical alert bracelet.

Also let your loved ones and coworkers know what to do when you have a seizure. (For one thing, do NOT allow them to put anything in your mouth!)

Good luck. :slight_smile:

I don’t know if you are interested in these products, but you said you spend a lot of time home alone (or at least you will, now that you can’t drive) and your husband is at work so you will be home alone a lot. A monitor that can call for medical aid and alert your husband if you faint or have a seizure is probably a good idea. At the very least, it’ll give you peace of mind.

As Guin said earlier, find your triggers. That will also help. Apparently they don’t publish ‘epilepsy for dummies’ or ‘the complete idiots guide to seizure disorders’ guidebooks, but this one seems like a good intro book on the subject.

I dug upthe post I made the first time this happened, in 2013… apparently the diagnosis then was ‘‘syncope.’’ But in reality it’s pretty clear that was my first seizure.

What I need to know is whether or not I was taking Wellbutrin at the time. If so, there’s some good evidence there that the Wellbutrin caused or exacerbated my condition.

Thanks Wesley I am definitely interested in something like that just because being home alone scares the shit out of me right now.

Hmm. I hope this isn’t too forward, but I searched your username and the keyword wellbutrin. One of the first things that came up was this post you made in July of 2012.

Did you take it off and on, or did you start in 2012 and keep taking it consistently the last few years?

IIRC I took it consistently until June 2014, when I got pregnant, then I tapered off. I went back on it in fall 2015.

So I guess it can’t be ruled out as a trigger.

Sorry to hear that, in the post I linked to you seem to imply wellbutrin is the only thing that has worked for your depression.

Were you taking immediate release or sustained release tablets? The impression I get from the above is that the sustained release tablets have a rate of seizures roughly what the general public do, while those who use immediate release have a rate 5-10x higher than normal.

I was taking sustained release, and only at a quantity of 300mg. So I guess the risk shouldn’t have been too elevated.

All right, I’m just getting freaked out. I asked for a description of what happened at work on Monday from eyewitnesses… turns out, I had two seizures at work, one right after another. That means I had a total of three seizures on Monday. When I told the neuro in the ER that I’d had two in one day, she said that was unusual. What does it mean to have three???

I don’t remember a damned thing. No warning, not a sound, not a smell, not even feeling a little woozy. Reading that, I’m glad I don’t remember, it sounds horrifying to witness.

I’m just scared. I don’t like this at all. I don’t know how to deal with it. I’m supposed to meet with HR and my boss tomorrow to discuss the new work plan/emergency protocol and I’m just overwhelmed by the whole thing. New meds scrambling my brain probably do not help.

Here is a website about cluster seizures.

Let me ask you something, did you bite your tongue during any of your 4 seizures? Ask your coworkers and husband if you did.

I’m obviously not a doctor, I’m just someone with a background in biology who likes medicine and knows how to use google. There is a condition called RAS (reflex anoxic seizures; reflex asystolic syncope). It normally occurs in kids but can happen to adults.

Overstimulation of the vagus nerve can temporarily stop the heart (it sounds scary but it is supposedly not life threatening), causing a rapid loss of consciousness, pallor, seizures, etc.

Has RAS been ruled out?

Interesting. I don’t know if I bit my tongue. I think I severely burned my tongue before this happened while I was drinking some tea. My tongue was numb and sore for days… still kinda is. But I do think it was a burn not a bite.

I don’t think anything has been ruled out, other than a tumor or physical obstruction. I have yet to have a consultation with a neurologist outside of the one in the ER.