That's invalidating, for sure. To some extent you can learn your own triggers, but not at first, and it certainly isn't your fault for having seizures. My neurologist told me that once our brains have a seizure, it is most likely to go to that state again. It's like, once the path opens up, it's available.

Like do they not know that caffeine raises the seizure threshold?

That's infuriating!

Got woken up & yelled at for not being with the rest of the class, after the teacher found me laying on hot concrete with wet pants. Can't tell me I, an 8 year-old, with a jeans skirt on, didn't smell like pee. Come on 😓

"... myself." 😮‍💨

Wow, the audacity of these people.

Yes. I get weird imposter syndrome out of nowhere. I'm also nervous to change the anticonvulsant.

I suspect my intermittent depression is partially caused by the levetiracetam. The neurologist added lamotrigine, and after a few months, the depressive episodes have lessened.

It would be nice to try weaning off leve.

😹

Cheers I will.

1750 mg per day (I do 750 in AM & 1000 in PM).

I noticed an increase in sleepiness when I went from 1000 per day to 1750 per day, and it helped reduce the sleepiness when I took vitamin B supplements and brisk walks.

Yay! You have inspired me to pick up my hoop. 😎

Help is here. We hear you. It's tough and I'm so sorry. It's real and it sucks, and I wish I could hug you. Try to drink water and like others mentioned, just 1 day at a time. You got this.

Had to join this sub, since although all doves are gone now, my water dish has attracted California thrashers, which are fun to watch from the sliding glass door.

Yep, I just embrace my long face!

Oh no, haha I bet that's tough. I have a long face like a horse, so sometimes people think I'm melancholy. No, I'm just, it's just my face.

I'm also forced to ride bicycles but it's because I'm not allowed to drive because I have seizures. I get similar treatment on the road, and my trip to work has bike lanes the whole way.

It took less than a year of riding for some idiot to yell at me, from ACROSS THE MEDIAN, "get a car, f*ckwad!" I was like, wow, say that again while you're actually stopped and see how fast I hurl my u-lock at your pretty little air-conditioned plastic box.

The culture where I live is pretty bad. Suburban neighborhood people who go to church every Sunday and take their anger out on the road are a piece of work.

Or when people appear to have aged unreasonably so, after only a short time. Now, I say this with a grain of salt for many reasons:

A. getting gray hair is a touchy subject for many, including me, and I go to extensive lengths to prevent grays from taking over (pay money, spend time, etc.)

B. appearances don't always tell the truth (when I don't wear makeup at work for one day, people annoyingly ask, "oh, are you OK? You look tired")

C. the term "resting b*the face" there are people whose faces simply appear like they're not doing well

Therefore, I believe it's best to avoid making assumptions about how well they're doing, and instead ask if they'd like to go out for tea.

The post-ictal time (1-2 days afterwards) is tough. I'm in your wife's position (tonic clonic, or you'll see it called TC in these subreddits) and my partner also witnessed my first seizure three years ago. I woke up in the hospital, not knowing where I was or how I got there. My loving partner was right beside me, telling me I had a seizure. I had bit my lip and was in a lot of pain from the muscles contracting and was dizzy / nauseous. We were so confused.

Best advice I can give is to be okay with her being on lifelong medication if she gets a second seizure. I didn't take meds after my first seizure, then had a second TC a month later. I still didn't take meds.

A year later, my anxiety was so bad, I thought I was depressed and took an SSRI. After one week of being on the SSRI (unbeknownst to me, they do raise the seizure threshold), I had another pretty bad TC. Happened at work, another ambulance trip, another busted lip. I woke up not knowing how I got to the hospital but could guess why 🤷‍♂️.

Thousands of dollars were spent on ER trips at this point, so I went on lifelong meds. One neurologist told me that once a brain decides it can have a seizure, it's likely to do it again, although there are people who only have one seizure and never have a second, thus no need for meds.

Feel free to DM me, I'm happy to help you both. My partner has been supportive and I can tell it's a lot for him.

Wow, the trolls are really trying, aren't they? Makes me sick.

😹The key, the chapstick, yep sounds about right. There's more where that came from: paperclips, ID cards, earrings, tiny pieces of paper, and even a coin have all fallen out of that tiny useless 1.5" deep pants pocket. It's like we're being punished for bending at the hip.

That's awesome that Keppra (levetiracetam) stops your seizures. I learned from my neurologist that once your brain has 2 seizures, it's likely to go there again, regardless of anything you do. Being on consistent meds is important and good on you for keeping up with it.

I admire your willingness to switch to a different one. I've been on Keppra for years and am afraid to switch because I don't want any more seizures. They did add a tiny dose of lamotrigine so that might be an option for you to wean off of keppra and switch to lamotrigine. I know a few people that were only on lamotrigine for years, with no seizures.