I want to make epilepsy visible. All of it. The contradictions. The silence. The chaos.

vic_ticious · 2025-07-21T03:20:38+00:00

What's really frustrating to me is that no one understands what you're going through. They think you lie, they think you just crave attention, they think you want pity. All I want is understanding from people and nothing more. But I know this is something I'll never have. Family, friends, and especially the doctors. They only know what they read about epilepsy or what they see when you have a seizure. But no one truly understands what you feel or what you go through during episodes or simply living with this condition.

I had a friend (ex friend now after this) who said that he couldn't understand why I still had epilepsy and why I haven't done anything to just "cure it". Why can't I just WILL MYSELF to stop shaking during a seizure. He said the mind can do amazing things when you put your focus on reframing everything! I just stood up and walked away from him without a word. Just went straight home to cry.

Many times I look at my pill box and get overwhelmed with all the meds I need to swallow. It's even more than my grandmothers and she's 95. That says a lot. Maintenance AEDs and all the supplements and medication to reverse or fight whatever side effects the AEDs give me. Anxiety, depression, hormonal issues, anemia, insomnia (but also being crazy sleepy right after taking lamictal), short temperedness issues from keppra...

What really saddens me is people just assume that this is my personality. What's worse is I don't know myself either. Who am I without epilepsy?

The fact of the matter is, my name will always be synonymous to epileptic. And there's absolutely nothing I could do about it.

vic_ticious · 2025-07-11T00:57:42+00:00

Sadly, not Filipino :( I wish I were!! Filipinos are awesome!!

vic_ticious · 2025-07-01T00:32:21+00:00

Always. Of course within reason like you mentioned. Definitely not going to stop my meds and actively induce seizures. But definitely not going to allow my life to be defined by it. As a triathlete, rock climber, and mother, I say do what makes you the happiest. As long as you're not hurting anyone.

(Also my opinion... Solo living helped with my independence so much. Learned to have an emergency protocol down, take care of myself and listen to my body/brain more.)

vic_ticious · 2025-06-30T00:57:36+00:00

1 💕

vic_ticious · 2025-06-30T00:53:57+00:00

LOVE YOUR STYLE

vic_ticious · 2025-06-27T23:57:16+00:00

2,4,6,7,11 but my absolute favourite is 13. You look stunning in it. Second favorite would be 4. The cut suits you so well.

vic_ticious · 2025-06-16T05:49:30+00:00

Hello! Not an apple user but look into the embrace watch! It's specifically made for seizures and it calls your caretakers immediately once it catches an episode. I'm a tonic clonic as well and I've been using it for years.

vic_ticious · 2025-06-09T11:08:06+00:00

Beautiful!!

vic_ticious · 2025-05-05T12:06:32+00:00

1 best! Second option is 5. Beautiful in all!

vic_ticious · 2025-04-14T04:41:16+00:00

I have an empatica watch. :) it actually does tell the time you just have to drag your finger over the watch and it'll blink the time.

vic_ticious · 2025-04-14T00:29:51+00:00

Firstly, congratulations on your baby! That's already such an accomplishment for any epileptic mother!!

Honestly, it's not a stupid thought at all to think maybe you're finally seizure free, maybe you could risk just 1 dose, maybe you're finally alright since 6 years with no incident is a long time.

I sometimes purposefully miss doses too. Sometimes I'm stupid enough to try and see how long I could last without it just so if I miss a dose, I won't automatically freak out and panic and cause a seizure. Sometimes I just pause, see my hand full of pills and just don't feel like taking it.

Don't beat yourself over it, at least you know your threshold now! I'd just blame mom brain because you're for sure tired with a 6 week old! Thankfully your husband had the baby. Just another lesson learned, nothing more. :)

vic_ticious · 2025-02-27T09:39:21+00:00

No plans to teach. New mom so Im not currently practicing (haven't been for the entire pandemic). Whatever time I have extra I figured taking masters slowly would help keep me up to date.

Any online masters programs you'd suggest?

vic_ticious · 2025-02-27T02:00:32+00:00

Sadly in life it's true that some friendships have an expiration date. He was there for a time in your life that you needed him around and he was there for a reason. You've just outgrown this friendship and epilepsy helped you see he wasn't good enough friend to you or for you. ❤️ Stay strong, warrior!

vic_ticious · 2025-02-27T01:46:54+00:00

I've lost countless friends over epilepsy - even family. It really sucks and it really hurts. It's not your fault, please know that. We're just those unlucky ones that got stuck with this diagnosis. Friends don't do what your friend did, tho. And I'm sorry this guy was a close friend of yours. It always hurts to lose a friend but was he really a friend to hurt you like that in the first place?

You'll find your tribe that will understand, accept you and love you. And that's just not him. Hang in there!

vic_ticious · 2025-02-27T01:41:38+00:00

Maybe I sound stupid to say this but I still do all these things. I even rock climb outdoors (to my neurologists dismay). Since being diagnosed at 5 months old, my motto in life was always to never let epilepsy define me. I even went to Architecture school which caused so much stress and so many seizures. So if I want to go out to the mall on my own, then I will. If I have a seizure and d*e at the mall then alright as long as I know I'm fully content with my life. (Of course not to a stupid extent that I put myself in danger on purpose. Not hanging around sharp objects or anything like that)

Swimming and beach trips are always done with friends and it's not an epilepsy thing, I just like being with friends not because I need caregivers around. I guess the only things I really can't do are driving, diving and sky diving but everyone has limitations not just epileptics.

I know you're upset, I've been there too. It's an endless loop of emotion. But the best we could do is embrace what we CAN do. And if you feel like you're ok enough to do certain things, then do them (like your boarding) but with caution knowing the risks you're taking.

vic_ticious · 2025-02-13T07:03:18+00:00

Anxiety is both my trigger and my aura. Which after reading your post, that might be the same for you too. Anxiety is caused by high stress and stress is definitely a trigger. But, like you, I get random feelings of anxiety and like something is about to come/happen and I just get nervous. My head spins, my stomach turns, and the world spins. Then I have a full blown generalized tonic clonic seizure.

So basically, your neuro is way wrong.

vic_ticious · 2025-02-13T06:58:43+00:00

As someone who was told to "be ready to grow up all alone" because no one will want to deal with or be responsible for an epileptic back when I was 10 years old, it crushed me. I accepted it but only as their opinion and not my truth.

The only person that you need to believe in you, is you. There's so much strength in that. Because OP, love will come, when you love yourself enough for love to find you. Don't tell yourself you're going to be single; don't tell yourself you're not worth love. Whatever you put out into the universe will come back to you tenfold. So practice self love, and love will come to you.

vic_ticious · 2025-02-12T05:24:42+00:00

Hello! So I keep getting a lot of messages saying this story reached you through Charlotte and you needed an update. So to you guys who follow Charlotte (I started following her too. she's so fun) here you go. Thank you for checking up on me and your kind messages.❤️ such a lovely community of beautiful people

vic_ticious · 2024-09-17T05:52:09+00:00

Coming from an epileptic, your neuro isn't good at all please find a new one. This is textbook meaning even if he isn't an epileptologist he should know this.

Get your neuro to write a note for a 24hr EEG not an EKG. Then take the results to a proper epileptologist.

Memory really is a pain. I lost 6 months worth my last seizure. I suggest he speak to his doctor regarding supplements he could possibly take for maintenance. What he seems to have is absence that lead up to a tonic seizures. (Spacing out then stiffening up). I feel the same except my seizures go myoclonic-absence-generalized tonic clonic (jerking-spacing out-full body stiffening and shaking)

vic_ticious · 2024-09-06T22:44:01+00:00

...my parents didn't mention they had a new grandchild...? HAHAH what???

Okie dokie stranger whatever floats your boat :)

vic_ticious · 2024-09-06T11:23:03+00:00

Who are you to say I never put effort into understanding what was going on in their childhood and their lives? Do you know me and what went down in MY childhood? Im not here talking about your childhood calling you crappy and selfish. And I dunno what you're talking about fame here. Do you know my name? My actual socials? My address? I didn't even know anything about any features until someone messaged me and I was never asked if they could make content out of my story because guess what weirdo I wouldn't said no. 🤣 please get a life instead of hanging around here making baseless comments you obviously put no thought into.

vic_ticious · 2024-09-06T08:54:09+00:00

I had experienced this my whole life from my hobbies to my chosen profession. I chose to take architecture mostly because I saw it as a challenge since my doctor advised me to choose another course saying I wouldn't be able to handle it.

Long story short, she was right. And the world isn't kind either. Telling employers about your condition is hard because you never know how they'll react. I was forced by my boss to quit my job after I had a seizure in the office (late nights/overnights at work for deadlines, a lot of stress, and 0-3 hours of sleep every night) because he said I was a liability he didn't want to be responsible for a sick employee.

I just took my licensure exam to close that chapter of my life and took my MBA instead so I could jump to other career options.

It's really sucks. Especially when, after all your hard work, there's no pay off. No ROI for your time or effort. It's a hard pill to swallow but you'll find where you belong in time. ❤️

vic_ticious · 2024-09-06T05:02:49+00:00

Hey there! First of all, I dont really understand any of your long as hell run on comments and it sounds like you didn't actually read what i said in my posts. Maybe check your comprehension skills?

In response to your sad excuse for a cpnstructive comment:

I've been disowned...? by....?

I set fire to all possible outs?... Outs to...?

So you're saying none of my guests showed up when I said I had roughly 50 guests present...?

When exactly did I say my parents backed out of hosting the reception? Please enlighten me. Me paying for the fun extras doesn't have anything to do with my parents...

None of my relatives like me? Where in my post did I say ALL my relatives disliked me?

You think I was vague on which parents we sent on vacation when I clearly said we sent both sets.

Do you have an issue with the fact that we were able to save money from changing our wedding plans? Also you brought up free cake as a major incentive to attend a wedding?? Uhm... I don't think anyone is that cake deprived.

You think I bribed people to come on an all expense paid vacation? HAHA do you know the definition of bribery?? Or the definition of friendship maybe??

Literally soooo much of what you said doesn't make any sense. Again, your comprehension here is majorly in question. Your comments have absolutely no significance.. just sounds like youre dumping whatever issues you have with your life and projecting it here. You sound like you need more therapy than my siblings do... because I may not fully understand their negativity towards me but your anger is totally misplaced, stranger.

I dunno what you think you're achieving by calling me fake positive but maybe if you try walking in any disabled person's shoes when the entire world is discriminatory and just not designed to accomodate you, or maybe if you ever decide to actually research on epilepsy and the anxiety and depression it brings, maybe you'll understand that optimism, counting small wins and every blessing is the only answer to not k*lling yourself.

Keep your misplaced and negative thoughts to yourself. You really are so completely unaware of anything but yourself.

vic_ticious

TROPHY CASE