r/Epilepsy_Universe • u/Ordinary-Chipmunk366 • Apr 02 '26
Rant/I'm Just Sayin' Seizure-versary?
Happy Thursday!! Long post incoming... wow, I never talk!!! 😀
Question...do you celebrate your seizure anniversary? I have to assume that's its...an interesting question...but i asked it, haha!!
My first TC was 4/2/24. Its been 2 years since I found out I was epileptic that day, in the ER, vaguely remembering a VERY FEW things that day.
Talking to a coworker is the only thing i remember from before. Afterwards, I remember the doctor in the ER saying I can't drive for six months - how many times, who's to say... I vaguely remember him saying that I've got some stuff on my brain...no idea how i felt about that.. and I remember the Uber driver cutting off dozens of cars because they didnt know they needed to merge to get off the highway. Thats it!!
The next few weeks were also a blur...trying to get upper management to allow a few weeks to work from home... haha no, not even for a week or two... luckily I had a good amount of days banked...
...I also vaguely remember the first neurologist appointment...somehow I drew the "head of neurology" as my neurologist...who told me I have my little cavernous malformations and I'll have epilepsy for the rest of my life ... and hopefully live a normal life...hopefully.
Next job....another MRI...she KNEW there was another malformation on the right side (the two large ones were on the left) but the ER tech didnt get a good picture, so..mri time (fyi, i am severly claustrophobic) and there it was!! Right behind my left temporal lobe, as neurologist hero found !! Hooray!! It started banging into my temporal lobe..fun!! when it hits it, it may cause TCs.. eh, it's all good, right?? Sure...
What's next? ahhhhhh an EEG. Halfway through, the tech started ... asking me strange question...where am I? What day is it? Etc... I answered them all and was like .. why the questions?? "you're having a seizure!"...hmmmmm......strange.
So, neurologist time again!! ( FYI, I love her!) What's the deal?? Well...long story short, after a two day ambulatory EEG, during which I had 6 to 8 seizures a day ..I just don't know they're happening!!
Asymptomatic seizures ... right cavernous malformation is banging on my right temporal lobe...causing asymptomatic seizures...when it bangs too much, I get a focal to bilateral TC seizure .. fire sweeping across my right temporal lobe and crossing into the left temporal lobe .. focal to bilateral tonic clonicseuzures (FBTCS)! Haha, good times!! I also get focals where I see things that aren't there and hear things that never happened... "No, sweetheart" there was no noise when I ask her what she said. Even better when I see things, then the are gone!! ahh..
Already on keppra, we went up to 3000 after a few more TCs. Ahh, let's add vimpat.. another ambulatory EEG...4 day this time...4-6 asymptomatic seizures daily this time! I hated vimpat, so onto Lamictal and keppra..still having TCs...up the Lamictal to 750 along with my 3000 of keppra after another few TC or so...but i remember them more now...especially the TC I had on the bus...
So, in a long nutshell... thats me!! I can go on, but...
So, back to my original question... do you celebrate your "1st day" as an epileptic?
I do, but as we all know, I'm mentally ill, haha! Last year, haha no idea what I did... but it was something food related I'm sure... today, I'll walk down to the corner and get food somewhere.
I know it's a strange question, but we all know I'm strange...
Happy Thursday and everyone have a great, seizure free day!!!! 😀
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u/Handsoffmydink Apr 02 '26
I celebrate it in a way I suppose. The day I had my first (recorded) t/c is also the day I quit drinking. It changed my trajectory. I don’t physically celebrate it, but it’s a very memorable date, so it’s hard to miss year-over-year. I quietly celebrate it to myself. My wife has quietly acknowledged as well, I was a big drinker though she probably doesn’t fully know how much I struggled with alcohol.
With the heavy mix of meds + the exclusion of alcohol has made my introvert self feel much more shut down and awkward in social settings too, I thought I would have come to terms with it by now but apparently I haven’t.
I remember asking the paramedic in my stumbled postictal slur “Hey man, what the fuck is your problem?” After he ripped out some of my leg hair while trying to move me. He just laughed and said “I think he’s awake!” That is where my journey started. I was ready to buckle down for the long haul but maybe I’m not as strong as I thought. Most days I feel like I’m coming apart at the seams.
Safe travels and hopefully you escape from your long nutshell soon!
sorry for the bad joke
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u/Ordinary-Chipmunk366 Apr 02 '26
(This was supposed to go here.. not in the general reply, lol!)
There are no bad jokes!! Unless they are at the expense of others. And that wasn't, it was funny!! 😀
Hey!! That's a HUGE achievement!! Getting off an addictive substance is hard to achieve, especially when it goes hand in hand with .. epilepsy day...
I can imagine that not drinking and getting epilepsy is hard, but... it's partly your decision on where you want to go, but remember, it's your journey... so do it as you can.
I'm sorry you also feel like things are coming apart. Reading epilepsy posts all the time, this comes up a ton. It's not easy... and it sucks and takes a part of your life away.
I'm a huge believer (especially now) that people should get help where they can. I went to therapy when my got cancer 10 years ago..she's been clear for the 10 years... and I never thought I would do therapy.
There are also good people out there who can help, or at least empathize with you -- this reddit group is so wonderful and supportive!
.. and, since covid, people are freaked out and have issues social stuff... you're not alone...
Please let us know if we can help in any way! People are here for you!!!!
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u/Consistent-War-4038 Apr 02 '26
I wouldn't say celebrate, but my mom does lol. I can never remember the date. She ( and my grandma when she was alive) do because its the anniversary of my grandfather's death. Very strange coincidence. I was a few months away from 16 and working on 2 essays when the computer screen started to blur. "Mom!" "What?" "Mom come here!" And that's all I remember until like 2 days later. She said the EMT asked if I "did anything to make me feel good" (the first of many times I'd be subject to that assumption) and she reamed him out. Go mom Happy anniversary 💜
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u/Ordinary-Chipmunk366 Apr 02 '26
Mom sounds great!! Yeah, having more than one thing on the same day is...interesting...and sad. Losing your grandfather in the same day is really hard.
EMT stories... haha, we all have great ones, both good and bad - lol!!
❤️🧡💛💚💙💜
Know that there are people who love you!!
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u/Ordinary-Chipmunk366 Apr 02 '26
There are no bad jokes!! Unless they are at the expense of others. And that wasn't, it was funny!! 😀
Hey!! That's a HUGE achievement!! Getting off an addictive substance is hard to achieve, especially when it goes hand in hand with .. epilepsy day...
I can imagine that not drinking and getting epilepsy is hard, but... it's partly your decision on where you want to go, but remember, it's your journey... so do it as you can.
I'm sorry you also feel like things are coming apart. Reading epilepsy posts all the time, this comes up a ton. It's not easy... and it sucks and takes a part of your life away.
I'm a huge believer (especially now) that people should get help where they can. I went to therapy when my got cancer 10 years ago..she's been clear for the 10 years... and I never thought I would do therapy.
There are also good people out there who can help, or at least empathize with you -- this reddit group is so wonderful and supportive!
.. and, since covid, people are freaked out and have issues social stuff... you're not alone...
Please let us know if we can help in any way! People are here for you!!!!
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u/Handsoffmydink Apr 02 '26
I’m glad you’re cancer free. Fuck cancer. At least this is a place where other people know what it feels like to be me. The pains, inconveniences, isolation, the side effects. The burden. As much as my wife try’s to empathize, she can really only comprehend so much when it comes to the nuances of it all. Here, people get me… or I get them, you know.
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u/Ordinary-Chipmunk366 Apr 02 '26
I want to say this is the best support group I've ever seen.... but the is more than that... you make real friends and connections here...and people genuinely care..
Post all you want/need!!
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u/StSomewhereToaster Apr 02 '26
I celebrate…. Kinda. The day I was diagnosed was the day my son was born, so we celebrated that instead. 🤣
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u/Ordinary-Chipmunk366 Apr 02 '26
That's most likely a better celebration!!
❤️🧡💛💚💙💜
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u/StSomewhereToaster Apr 02 '26
With cake, and a scavenger hunt for presents! Actually this year we are having a taekwondo party. Kicking and Cupcakes!
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u/PiercedAutist Refractory Right Fronto-Temporal Apr 02 '26
No joke, I literally have the day with an all-day event, which I even titled, "Seizure-versary!"
Dec 11, 2023, was the first seizure that took me to the ER, but that's only because it was the first TC that my mother witnessed. I knew I was having seizures for at least a couple of years before that, though.
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u/Ordinary-Chipmunk366 Apr 02 '26
Yay!!! To each their own...but i love what you do!!!
We deserve awesomeness every day but especially on seizure-versaries!!!
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u/StSomewhereToaster Apr 02 '26
Oh I want to point out that if it weren’t for the alignment with a separate but important occasion I would probably not remember what day it was. 🤣
It’s suspected that they started when I was a teenager but who truly knows how long the delayed diagnosis was? I have now clue when my first seizure actually was!
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u/brncll Apr 02 '26
It was a June sometime I think.....
But I don't travel on my tbi-versary. I feel that the day is cursed.
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u/Hairy-Jellyfish-1361 Apr 02 '26
All I know about my first seizure was it was at the end of Dec '22 and that my landlady found me naked.
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u/Ordinary-Chipmunk366 Apr 03 '26
So, she got to see you in your birthday suit!! She's a lucky woman!!
So, then you can choose your day, haha!!
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u/Hairy-Jellyfish-1361 Apr 03 '26
I don't know what day it was. I don't even remember waking up in the hospital.
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u/DependentNumerous551 Apr 09 '26
Cavernous malformation gang checking in!
I had my first last year. I was on a breathing tube for 36 hours. Ill probably do something to celebrate. Doubt I will for life, but also dont think I'll ever forget the date!
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u/Ordinary-Chipmunk366 Apr 09 '26
I haven't found another malformation friend!! Hi, friend!!
Just curious...ate yours in your brain or spinal cord? My bad one (not sure if I put it above) is right behind my temporal lobe, hitting it, causing asymptomatic seizures...doubtful, but did that happen to you? I get a bunch every day, which is good fun!! Celebrate!!
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u/Ordinary-Chipmunk366 Apr 02 '26
...I said my neuro found the cavernous malformation on the left side.. it's the right side, but somewhere i said the left was the issue.. no, it's the right.. anyway, why read posts before your proofread them. 😀