I do have to say based on my experience and googling descriptions, these really do sound like grand mal seizures more than some vasovagal event or RAS. My husband has noticed vocalizations, drooling, and the postical confusion I have experienced in every event was very intense. I was not just feeling faint afterward, it would take a full 30 minutes for me to even remember who I was, and pretty much the entire recovery period I felt like I was gonna throw up. Whatever is happening is really knocking my brain for a loop in a really profound way.
Also thanks for the medical ID recommendation. I ordered one, it’s being made now and it comes with an electronic health record for EMTs and stuff to access.
Just want to say I hope they figure out real soon what’s going on with you and some way to control it. Take care of yourself!
Perhaps look into getting a seizure alert dog? I don’t know anything about them myself, but I’d look into one if I were having seizures.
I’m sorry that I don’t have anything useful to add, but I hope everything gets figured out soon!
Amnesia from seizures isn’t uncommon – I don’t remember any of mine (the big ones, that is). I’ve been told that when I wake up, I’m confused, I’ll try to argue, I forget certain things, etc. THAT scares me, almost as much as the seizures themselves. Then I usually fall asleep after that, and then I just wake up feeling awful. And I’ve bitten my mouth up plenty. (Once I somehow managed to bite my arm. I suppose I had it in front of my face or something. I still have the scar)
You might feel really weird for a day or so afterwards. That’s called the “post-ictal” phase. It’s not fun, but it’s not unusual. I refer to it as the “seizure hangover”.
(I’m glad your workplace wants to know what to do if one happens. When I tried to tell one of my coworkers back when I was still at the science center, my boss asked if I really wanted to be known as “The Girl Who Has Seizures”. Um, okay)
It isn’t a sure fire method, but whether you bite your tongue or not during a seizure can help distinguish if seizures are due to epilepsy or something else.
Ugh, sorry to hear you are dealing with something so scary and unpredictable.
Is your neurologist aware that you are prone to depression? Just to be aware of this so you can keep an eye out for it, Keppra is actually believed to have a potential side effect of causing depression, so you may want to talk with the neurologist about what options you would have if you feel like it’s making your depression issues worse.
I hope you don’t have any more problems with seizures and feel better soon. I was wondering how you have been since you haven’t been on this board lately, and I am sad to see that this happened to you.
I was diagnosed with epilepsy 17 years ago. I have complex-partial seizures (I black out but keep doing whatever I was doing and most people don’t notice I having one) and absence seizures (I get severe déjà vu, can’t focus, and my memory is all screwed up). I have had tonic-clonic (full body) seizures but only in my sleep and it’s been several years.
I’ve been on several different kinds of medication (Deppakote, Lamictal, Zonegram, now Keppra and Aptiom) and was able to get my driver’s license for about a year and a half, but my seizures started up again. I have about one a month, but sometimes I’ll have a couple in a day.
Sometimes when I have seizures I get depressed and angry, but my family is very supportive. Letting your friends, family, or whoever you’re around a lot know about your seizures and how you’re doing is a must. Not only is it for your safety, but you can talk about your condition plainly instead of being embarassed.
It’s important to know that epilepsy is covered by the Americans with Disabilities Act. Your work can’t fire you for having epilepsy and if you start taking the bus to work they probably offer a discount.
I’ve been on Keppra for awhile now, and it causes fatigue (for me at least). I can take a nap anytime. Anti-convulsant medications have lots of possible side-effects like loss of words, mood swings or suicidal thoughts. Always be sure to read about them when you get a prescription, and share the information with someone else.
There are lots of online communities like the Epilepsy Foundation which often have activities, gatherings, up-to-date information, and forums.
I hope things turn out OK, and feel free to PM me with questions or just to chat.
No experience with seizures, but I wanted to offer my support.
I know you have a Cat Overlord. There are dogs trained to detect oncoming epileptic seizures. Is that an option?
I was just reading through to see if anyone had suggested that yet. I know someone who has one, a childhood friend who found out he was epileptic when he crashed his car during his first seizure. He’s a teacher, and his dog goes everywhere with him, has become an accepted part of the faculty. 
It’s even detected ill health (unrelated to epilepsy) in some of his colleagues.
At the very least, they can give you enough warning so that you can put down the knife, get away from the stove, lie on the floor, etc.
Well, Sr. Weasel hates dogs. I know he’d be open to it if absolutely necessary for my health, but I think it would have to be happening more than every three years for me to get away with that. I think for right now nothing is off the table.
Thanks everyone for your support. I am feeling way calmer today. I met with my boss and HR, they were great, did not pressure me at all to return right away and set up my computer today so I can start working from home most days. I’ll be returning to work next Monday. They all seemed genuinely relieved and happy to see me, I’m pretty sure at one point my coworkers thought I’d dropped dead, so I gave them quite a scare. But they also understood I had no prior knowledge of this and that it was a shock to process. I couldn’t have asked for a more understanding response.
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I’ve been on Keppra for awhile now, and it causes fatigue (for me at least). I can take a nap anytime. Anti-convulsant medications have lots of possible side-effects like loss of words, mood swings or suicidal thoughts. Always be sure to read about them when you get a prescription, and share the information with someone else.
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Fatigue and headaches so far, but nothing Excedrin can’t handle. I spent maybe two hours at work today and the big things I noticed are not remembering if I already told somebody something and just having a lower frustration tolerance overall. (Like I couldn’t log into my computer at work and I assumed it was my meds making me stupid, but it turned out to be my boss changed my password.) I feel dumb but it’s hard for me to tell exactly how dumb I seem. So far my mood is okay, but I’m watching it very carefully. My general impression is that this condition is going to make depression tougher to manage, overall. I actually did used to take Depakote as a mood stabilizer, I had to quit after a couple of years because I gained an unhealthy amount of weight. I can’t help but wonder if any of the psychotropics over the years might have suppressed this condition from showing up sooner.
I also found the local chapter of the Epilepsy Foundation of Michigan. They have a hotline dedicated exclusively to people freaking out about being diagnosed with epilepsy. Plus community events and other resources, so I will be checking that out.
Giving myself permission to have a giant freak out about it seems to have been effectively cathartic because I’m feeling a lot more optimistic about it. It doesn’t hurt that virtually everyone in my life has been incredibly supportive.
I’m glad you are getting support, Spice Weasel. I hope everything gets better from here.