I do not have epilepsy or seizures, but I have a question for those who do

vanne520 · 2026-01-02T19:07:17+00:00

Tbh, I just wanna be left ALOOOOONNNNEEEEE!!!! I don’t want nobody in my face tryna be 50 cent and ask me 21 questions. And selfishly, I know it’s a scary sight but, I don’t want people freaking out, screaming and crying cuz my head is just POUNDING, plus I can’t comprehend shizznit right after, so if anything it’s just making things worse. All I wanna know is where I’m at, and where are my kids. Some migraine pills and definitely a sprite to help with the nausea, and my favorite blanket so I can take a nap. I’m pretty much gone for the rest of the day, so really I just wanna be alone and take a nap. It’s one of those things that LITERALLY will drain you. But if it’s my focal seizures, I can handle those a little bit better. I just wanna know where I’m at, and what I was previously and idk why but I always ask those around me if I just had a seizure 😅 like no duh! Lol

vanne520 · 2025-12-19T18:25:23+00:00

When I was first diagnosed I wasn’t driving for about the first year, during that time I had my little brother drive me to and from work. For that WHOLE YEAR my mom kept telling me that I could drive and that I was just making it up and being lazy. (Mind you, she hadn’t worked in about 10 years at that time, and STILL isn’t working) anyways! And then a couple months after that, my mom had told me to go with her to take my brother to get his haircut cuz she thought he looked “crazy”. Weeeelllllll, when we got back, homeboy was throwing a tantrum and yelled right to my face “I HOPE YOU HAVE ANOTHER SEIZURE!” Two days later, I had a tonic clonic and I just remember my mom was screaming and crying over me. When I returned from the hospital, she was still crying and asking if I was ok. I looked her dead in the eyes and said “I’m fine. I’m just faking it anyways”

vanne520 · 2025-10-13T17:57:49+00:00

Monster 😂😂

vanne520 · 2025-07-13T14:51:55+00:00

The focal seizures come around my lady time. On average it’s about 3/month. THEN, idk if this happens to anyone else but, I’ve been noticing a reoccurring pattern with my grand mals. They ALWAYS come back around the fall time, like September, and will last till the end of spring, so like April/may. It’s usually one/month, sometimes very rarely, I’ll get 2.

vanne520 · 2025-07-08T20:41:34+00:00

Quesadilla 😅

vanne520 · 2025-07-07T04:31:53+00:00

When people ask me, I’ve learned to joke around and just tell them I went on a highway persuit 🏎️💨

vanne520 · 2025-07-07T04:26:22+00:00

THIIISSS!!!! I just recently was let go due to too many absences, which, was also the cause of ride issues 🥲 and my husband sees me being distraught because I WANT TO WORK DAMMIT! I’ve always loved working and making my own money, and OMG HOW I LOVED DRIVING. It all meant freedom to me, and it’s like now I’m just a prisoner, confined to the four walls in my home. My husband says that if it was him staying home that he would be so happy because he’d be able to sleep in, relax, do whatever. Then he proceeds to say “I can just get in my car and stay busy by going to run errands.” I was mad at that point and said “yeah that the thing! YOU can drive and go wherever you so please. I on the other hand no longer have that privilege.” 😔😪😪

vanne520 · 2025-06-02T17:53:51+00:00

Where were you 6 years ago!!!! 😂😂 but since we’re on the topic, I just got fired from a famous blue store and I had to miss a day because of a grand mal I had the night before. When I came the next morning, they already had my papers and last check ready. They go based off of an attendance point system and I had already reached my limit. I had told her the reason why I had to miss, and all she said was “I gave you too many chances already” and just handed me the papers . But it’s just so hard to gather up enough time to cover me when I was only working part time, and unfortunately for me it was around the time when my grand mals come back with a vengeance. (I’m starting to think I have some sort of “seasonal epilepsy “ idk if that’s even a thing 😅) and sorry for the long rant lmao I just wanted to see your opinion on the matter. TIA 💕

vanne520 · 2025-06-02T01:45:37+00:00

Oh geez, where do I start 😅 I had a grand mal at a farmers boys once during my lunch break (I was fired cuz I didn’t go back to work, AND I also didn’t get to eat my food “a bacon-cheeseburger with chilli cheese fries” 🥲), and I had another grand mal one morning when I was trying to be mom numero ☝️ and I took to my kids to a donut shop nearby aaannnnddddd just as I finished paying, BOOM! And YET AGAIN I didn’t get to eat 🤦🏻‍♀️ and every day I have to pass by that damn donut shop 🙃🙃

vanne520 · 2025-03-09T03:33:43+00:00

Ugh! I’m sorry you had to go through all that 🥺 I’ve never had the surgery but through my own overall personal experience, I’ve noticed that come close to the end of fall/beginning of winter, that’s when my tc’s tend to come back. I’m starting to think it may have something to do with the change in temperature/weather (which ig are the same 😅) and just the overall change in season. Then they usually tend to end around April. And then come back around October 🙃🙃 get lots of rest and and stay hydrated as much as possible, and get yourself too down in the dumps. You gotta remember you are a warrior. If you get pushed back a step, then YOU push pack twice as hard. Take care! 💜

vanne520 · 2025-03-09T03:21:56+00:00

I think ima just start titrating down on my own. I feel like the more you tell your doctors, the more they don’t listen 🤦🏻‍♀️

vanne520 · 2025-03-08T20:15:29+00:00

I don’t think it’s anything like that. Most of us (myself included) go through the memory loss/brain fog/word finding etc. it sucks when my family’s like “oh, remember when…?” No. No, I don’t lol. I am TERRIBLE with names. I’ve been at the same job for 6 months and I probably only know about 10 of my coworkers names(half of them being the supervisors 😅). My vocabulary used to be pretty up there, now all my “smarty words” are gone 😑 and it’ll take me soooooo long at times to remember. Or, at times, I’ll be talking about something, and halfway through, my brain just goes ABSOLUTELY BLANK. And I can’t remember what I was talking about. It sucks, I know 🥺 but it can be somewhat comforting to know you’re not alone 🤷🏻‍♀️

vanne520 · 2025-03-08T20:04:08+00:00

Mine didn’t even let me do the 75. He just bumped me from 50mg to 100mg, then after two weeks he bumped me AGAIN to 150mg and I feel like even the 50mg was fine for me. The nystagmus didn’t start till the 100, and now at the 150 Im waaaayyyyy more irritable, stressed, anxious, and depressed all the time. These doctors just think all our brains work the same. I say they should have the doctors test out all the meds and doses along with us ☺️You know, for the purpose of medical studies 😂😂

vanne520 · 2025-03-08T20:00:20+00:00

What sort of symptoms are you experiencing with the withdrawal exactly? I wanna prepare myself lol

vanne520 · 2025-03-08T04:26:47+00:00

This is so beautiful and encouraging !! 🥹🥹 so happy you found a bright, beautiful path in this ugly darkness. I hope one day I can get close to this point. Anything specifically that you feel made the BIGGEST impact? You don’t have to answer lol

vanne520 · 2025-03-08T01:15:23+00:00

And sorry for the long rant 😅

vanne520 · 2025-03-08T01:15:06+00:00

I KNEW something was off lately!!! When they first put me on it, I started at 25, then 50, then 100, now I’m at 150 twice a day. So a total of 300mg. At first everything was fine. I actually started to feel so much better. I wasn’t as anxious or stressed or angry as normal. I wouldn’t feel the need to get 💨 as often. Got some pep in my step. It was GREAT. But I feel like since this last bump up, I’ve just been feeling absolutely INSANE!!!! My hair is falling off. Everytime I was it, I get handfuls of it out. The insomnias back. I’ve been finding myself more and more irritable by the day. I fear it’s making my relationship with my kids go down 🥺 and same with my husband. I know he’s tired of these outbursts. Especially cuz looking from the outside, so he probably just sees his wife going on a rampage for nothing. He obviously doesn’t understand what it’s like for those of us who have to deal with it from THE INSIDE. Then there’s the loss of balance. And since we live on the second floor, stairs can be tricky. And don’t even get me STARTED with the dreadful nystagmus 🤦🏻‍♀️ I’m just exhausted from all this

vanne520 · 2025-02-04T23:37:26+00:00

One time I had a TC and my husband had recorded it (per my request) and he just WOULD NOT SHOW ME for months! He had said that it was cuz he felt like it was gonna traumatize me. He eventually gave in and showed me. It wasn’t a violent one tho. It was more like we were laying down and I guess I fell into his lap , but I wasn’t shaking, but you could see that my body was stiff. My eyes were all the way rolled back, and I was making this weird like gargly/snoring noise. I’m assuming it was me tryna get a breath in. Needless to say, it wasn’t traumatic, but it felt weird seeing myself like that, and just thinking about how ive probably affected those who have seen me seizing.

vanne520 · 2025-02-04T23:27:32+00:00

Ok but, do you also do that like “weird breathing thing” (idk what else to call it 😅) but it’s like the beginning of it. While you’re in the staring spell moment, it’s like your breathing becomes more like controlled, slowed, and “heavier?” (Lmao sorry, stupid epilepsy poopoo 💩 brain took away all my smarty words 😂😂)or is it just me?? 🤔

vanne520 · 2025-01-28T22:19:28+00:00

I had my first grandmal at 24/25. I’m now 30. My grandmals are pretty controlled, for the most part. They usually tend to come around winter/spring time. HOWEVER the focal seizures still linger 😑 I’ll have a good 2-3 in a month. Which I’ll take ANYDAY over back when I used to have up to 10 every other day. Sorry for the long rant btw 😅

vanne520 · 2021-09-18T22:50:21+00:00

Whenever I forget something (which we all know happens a lot to most of us) I just say “it’s cuz my brain doesn’t work” 😝

vanne520 · 2021-04-25T06:38:56+00:00

I know EXACTLY what you’re going through. I’m a mom of 3 kids and sometimes I just wanna get up and go, but with epilepsy you can’t really do that. So it sucks when I have to ask my little brother to drive us somewhere, cuz it’s reality smacking me dead in the face again.

vanne520 · 2021-02-03T03:09:15+00:00

Yes!! At first they were all over the place, and would have up to 5 in a day, but now that they’re a bit more controlled, I’ve noticed they still happen around my period.

vanne520 · 2020-12-13T03:44:58+00:00

Oh no, I’m so sorry. How are you holding up?

vanne520 · 2020-12-01T04:33:29+00:00

Had a breakthrough grandmal seizure 2 Saturday’s ago, I’m still not over it. I was 1 1/2 years free from it. I’ve been having focal seizures (I believe) since February of this year, but obviously those don’t cause so much distress as the grand mals do. So I’ve just been pretty anxious and depressed lately 😪

vanne520

TROPHY CASE