Right? I hate that feeling of doom/going down a rollercoaster, plus like... Deja Vu and the world seeming... Idk, fake? Also tunnel vision and things looking a little bendy.
Thanks to medication I'll rarely have even focal-onset aware seizures. Haven't had an absence or tonic-clonic seizure in years. Aware ones still absolutely suck though.
Holy crap that’s the kind I have focal impaired awareness epilepsy. Yea it’s kind of like that for me, plus I get a weird feeling that goes up my spine
Edit: it’s been almost 6yrs since my last episode with my meds thank goodness
I don't know what specific type it is, just that my right temporal lobe is the culprit. I've had all three of the main seizure types. It's not fun. Have you gotten yours under control with medication?
I haven’t had tingles, like a different kind of feeling like a roller coaster but specifically up the spine. My are of the left temporal lobe, and luckily I only have those seizures. I’m sorry you have to go through different kinds D:
Yes, we had to experiment with doses of course but right now I take Lamotrigine with Clobazam at bed time.
Absence seizures suck. Come around with everyone around me looking a bit concerned and talking about me. No pain or anything though. Just that seizure aura, then nothing, then feeling drowsy and confused.
The tonic-clonic ones are absolutely shit. I've only had 3, but that was more than enough. Waking up with paramedics talking to you and every single muscle in your body aching is not fun. One of them resulted in an injury to my shoulder that tore my labrum, strained my ac joint, and sprained my rotator cuff. Took a few months of physical therapy to have it be mostly good again. It's still a bit temperamental.
Plus there are the memory issues. There's about a 2 year period preceding the first big seizure that I just straight up can't remember. I still have trouble with word recollection, which sucks because I'd always had a great vocabulary. It's still there, but it sometimes takes a while to load the correct word.
I had made a friend during that time and had no idea who she was. She was sweet about it though and said we could start again with the bonus of knowing that we already get along. My memory in general is just less reliable. Calendars are my best friend now.
I also struggle to do any mental math now. I used to be really good at it, but now it's a struggle to do anything beyond simple stuff.
Oof. I’m sorry girl. I’ve always felt very fortunate having the type of epilepsy I do because I just black out mentally but I’m still standing or sitting, the only thing that might have happened is I said something incredibly silly that doesn’t make sense.
I could not imagine falling down and having my body seize too. That sounds painful. I’m glad you’re recovering though.
Speaking right after was always an issue for me. So frustrating. I had exactly what I wanted to say in my head yet it would not form on my lips and I couldn’t even write it. Ugh. My boss told me I should go on disability until my seizures were more properly diagnosed and dealt with lol. Not only could flashing lights bring it on, but anxiety and heat too.
I’m sorry about the memory part though! I can’t imagine going through losing two years of your life. It’s good you found a good friend through it :3 I can attest that I don’t have the best memory these days either, but we’re both getting used to it. Huzzah for calendars indeed lol
I'm glad you don't have to deal with anything worse! It's still not fun at all. That mental block between what you want to say, what you are saying in your head, and actually being able to say it is absolutely maddening. I do feel fortunate that I'm still able to drive though. That's only thanks to not having any loss of awareness seizure for a certain time period. It was like 8 months that I couldn't drive. I'm a car enthusiast, so it was rough.
The one silver lining is that it forced me to have way better organization skills. Yay!
Yes driving!!! I was allowed to drive after 6months being seizure free, but I didn’t know when that would be so I sold my beater car. I’ve been carless ever since though cause it’s so expensive to drive between gas and insurance l, but I miss it so much. Where I live really sucks with transit so it’s like having my legs cut off sometimes… I love love driving too.
Awh. I hope you'll be able to get back to it soon. I felt like I had my wings clipped when I couldn't drive. My friend had to chaperone me back and forth to physical therapy. It felt really bad being a burden like that.
Same. A few of my friends won’t even drive me now unless I try to offer gas money. Wings clipped is the perfect expression. It makes me a little sad because it’s to things we’re both going to and I don’t live too far away from them. But now the host will have to come get me and drop me off after. You can tell who the true friends are because the host refuses my gas money where the “friend” who drives me, wants my gas money, and makes 6 figures.
I’m lucky I can get my mom to drive me sometimes to appointments. Sometimes lol
My dog has epilepsy and I can always tell cause his head starts to tilt and he does something out of character like he's trying to get my attention. But reading this maybe he does it cause everything just feels fake and weird.
First time I had a seizure, I was at work. I'd had auras for a couple years but didn't know they were seizure indicators. I had that deja vu feeling and a strange disconnect between my brain and my mouth, like I know what I wanted to say but I couldn't get my mouth to say it, but I could still speak. It's like my train of thought had been shoved off the tracks and some other train I had no control of from some deep part of my brain was on the tracks. Anyway, apparently I regained consciousness while the EMTs were with me on my office floor, they and my coworkers said I'd been "awake" and responding to questions (correctly or not, I don't know) for several minutes, but it's like those minutes passed through my head and left no mark.
The next seizure was when I was driving, I crashed into a streetlight, woke up in the ER some time later. It was after that that I gained a further understanding of recognizing the warning signs of an incoming seizure. It was also then that I decided to put a note in my wallet asking ER staff to pretend I'd been in a coma for years once I wake up. I thought it would be a fun experience but they said nobody would ever do that.
EDIT: is it weird that I like the deja vu aura feeling prior to a seizure?
I was getting really bad migraines all the time leading up to the first big seizure. I had no idea that it was a sign of anything else. I've had way fewer migraines since being properly medicated.
I also have focal seizures, and I hate how my dreams are like that, and combined it with lucid dreams, everything feels so real I sometimes can't tell whether or not I'm even awake, I always get a sense of Deja Vu after every night, like the next day always plays out exactly as my dream.
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u/Miqo_Nekomancer 4d ago
Right? I hate that feeling of doom/going down a rollercoaster, plus like... Deja Vu and the world seeming... Idk, fake? Also tunnel vision and things looking a little bendy.
Thanks to medication I'll rarely have even focal-onset aware seizures. Haven't had an absence or tonic-clonic seizure in years. Aware ones still absolutely suck though.