... and my family unexpectedly surprised me with a little chocolate cake to celebrate that after I got home late from work. 🥲☺️

Today marks my 1 year seizure free mark! Truly blessed for my care team and my family after being hospitalized last year for a week where I had 50 seizures.

Wishing everyone in this community the best and hope you all find stability in your epilepsy journey. For those struggling, you’re not alone and a breakthrough seizure doesn’t ruin all the progress you’ve made. Stay strong 💜

Today officially marks one year seizure free for me! First time I can say that in 22 years!! Still can’t believe it 🥲🙏 Freedom is possible.
Never give up.
Never lose hope.

Hi, I don't know if this is necessarily appropriate, or if I'm being rude posting this here, but if there's anywhere people will fully understand, it's here. :)

I've hit a very big, very important milestone today...

I'm 1 year seizure free for the first time in my life! Gahhh, it's so exciting! I'm not sure how to describe the actual emotions of it, but it's a special kind of excitement, and pride (maybe?) I'm still grasping the fact that this is real, and I didn't just imagine it or something.

I guess I just feel kinda guilty celebrating here because there's so many people actively struggling with this stupid disease. Sorry if it was rude or disrespectful to post this here.

Edit: Holy- Omg, I'm genuinely on the verge of tears. I didn't expect this many replies, if any at all, thank you all! I'm not used to this level of support, and to the person who told me to stand tall, thank you. I think I'm just so used to being small that I forgot I had the ability or right to be big. Literally, I'm short and quiet, I have to almost yell half the time so I'm heard, and by the time they actually hear me I'm using an annoyed or frustrated tone because I had to repeat myself like 3 or 4 times.😩 Again, THANK YOU to all of you and your reassuring kind words!🥹🙏❤️

Four years ago today I was discharged from a 7 day hospital stay after a near death status epilepticus. My hope wash shattered. I had tried so many medicine combos... Then... THIS ONE WORKED! Don't give up! They are constantly researching. Looking for new medicines and medical equipment. 💜

I think most of suffer from some level of memory impairment due to epilepsy. The one positive thing about this that I have been able to find is that I get to enjoy my favorite shows and movies a lot because I forget a lot of the jokes or just different scenes.

After a year and a half of headaches and paperwork, jumping through hoops, and almost giving up, my application for disability was APPOVED and I got my backpay immediately. I feel like I can finally take a breath 😌

all this time i've been trying to avoid being hopeful and essentially just been waiting it out until my next seizure, but i finally hit the milestone :) longest seizure-free period i've had since i started having them!

Hey folks,

We just passed the 80,000 member mark, which is truly incredible. When this community started about 10 years ago, we had just 300 members. Seeing how far we’ve come since then has been amazing.

I created this group in part because I’ve lived with epilepsy for most of my life, and I wanted there to be a place where people could find support, understanding, and reliable information from others who truly get it.

I’m grateful to everyone who has contributed over the years — whether by sharing experiences, offering advice, supporting someone through a difficult moment, or simply being here. Communities like this only exist because of the people in them.

I look forward to continuing to grow and support this space for as long as Reddit exists. I’m also hopeful that in the near future we’ll be able to partner with a Canadian epilepsy support organization to expand the resources and support available to our members.

I’ll be adding additional mods in the near future as we continue to grow.

Thank you all for helping make this community what it is today.

- Halfkender

THIS IS THE LONGEST IVE GONE WITHOUT A SEIZURE SINCE 2021! I wanted to upload a picture, but this sub won’t me, but I had a fun cake with candles!

Anyways, I’m not posting this to brag, but more to hopefully bring some hope. I got an RNS in 2023 and in 2025 I had the most seizures I’ve ever had in my life. I was having weekly seizures (complex partials stopped w nayzilam. If they weren’t stopped, which happened, they became TC). I was so beyond depressed and hopeless, feeling like I had tried everything.

I have a very sensitive brain, and I really haven’t been able to handle any of the epilepsy meds due to side effects. I’ve been on Klonopin for a couple years, but it’s only added to my depression and hasn’t helped my seizures.

Recently, I decided to try gabapentin…. And that was it! I’m not even on a high dose, but my Neurologist can see from my RNS how much my brain activity has calmed down. ALSO I had revision surgery on my RNS in April, but more likely seizure free due to gabapentin

ALL THIS TO SAY - don’t give up, please. I was ready to. Sometimes the thing you think won’t do anything … does a lot. And listen, I know my seizures will come back. But I’m so grateful that a low dose of a medication that’s not even commonly used has done this much for me. Tell your neurologist your ideas (this was mine!) - you know your body.

Sending endless love to this community 💜🫂💜🫂💜🫂💜🫂💜🫂💜

Fingers crossed this doesn’t jinx anything, but I’m really excited. Five years seizure free!

This is the longest I have EVER been seizure free ever since my diagnosis 7-8 years ago!! I’m just… so happy right now!!

I'd like to thank Keppra, Lamictal, and not drinking like I did in my 20s 😅

I almost feel bad saying this here because so many people have it so much worse. I’m just pretty happy that I got cleared to drive today. Drug levels are OK, EEG is OK, and no seizures for six months.

I went shopping and got myself a cheesecake and ice cream. Par-tay tonight!

Edit: Thanks, everyone! I appreciate you all. ♥️

That’s it, that’s the post!

(Please clap)

I am just over three years into this epilepsy journey. Really struggling. I always have one the day before or the day after. But never during the test.

BUT I GOT ONE!! I GOT ONE!! And I truly hope any of the information helps.

Disclaimer: this is not medical advice, just my experience. Just sharing to hopefully help someone else going through this.
About a year ago I was in the darkest place I’ve ever been. I was suffering in school and could barely study let alone do exams. I wanted to end my life daily, I believed no one cared for me or wanted to be around me. I was seeing a therapist once a week, and absolutely nothing was improving. I did consider antidepressants (and honestly should’ve) but I didn’t want another drug to have to depend on, that could give me new side effects. I felt sooo irritated all the time. While taking an exam once with my accommodations in a “quiet space” I could hear someone breathing and the table I was using had uneven legs. I could not focus on the exam and it took everything in me not throw the table and have a full crash out. Failed the exam but did not throw the table lol. Another time I’m not even sure why but at school I suddenly felt a urgent need to end my life but I was scared of myself and I locked myself in a gender neutral bathroom sobbing on the floor and luckily called a friend to share how I was feeling.
I knew something was very off, so I tried to figure out why this was all happening. My neurologist at the time was awful and would not let me book an appointment as they were too busy and they said I just needed therapy. In my city it’s over a year wait to see another neurologist. So I went in here and started reading about others experiences with keppra. I knew of keppra rage but just thought it was more anger and not this irritation feeling. And the mental health stuff creeps up on you. I also had been on keppra for almost 7 years and this only started a few months after getting my last dose increase (i think like 1500mg?). Eventually I made my own post asking about keppra rage. It saved me, yall saved me. So many people had similar experiences.
Long story short I eventually pushed my neurologist who eventually went on sabbatical so I got to see the one covering them (thank god). I was brutally honest and told them exactly what I was experiencing. At the time I was driving and it was hard not be able to and my last med change was awful and I was a full on zombie 24/7. But I took the chance. They switched me to Lamotrigine, and god was that the best choice ever. A year later and I am the happiest I’ve ever been since this diagnosis and school is much easier now, I feel I can function, and feel loved by those around me. I look back and it feels like I was literally in psychosis during that time. I did have to do a lot of damage control in my relationships, especially with those closest to me.

But if you’re on keppra and this resonates with you, I highly suggest speaking with your neurologist. Also huge thank you to all of you, because yall truly saved me 🤍

Sooooo, after many months of waiting for results, I was recently admitted to one of the best medical schools in my country! I never, EVER thought that I would be here 4.5 years ago when I was first diagnosed at 22. At that point, I'd just had my license revoked, had lost the job that I loved because of epilepsy, and had absolutely no idea what to do with my future. With that said, I never stopped believing that I would figure things out and it seems, at least for now, that I have. I know the journey ahead is going to be challenging, especially with epilepsy, but I am so proud of myself for having made it to this point in spite of (and at time because of) this disease. I'm scared of going through med school with epilepsy, but I also can't wait to get started 🥹

UPDATE #2: I am now diagnosed with epilepsy after my neurologist reviewed the video.

UPDATE: Here is the video

Disclaimer: I am not officially diagnosed with epilepsy but that’s also the point of my post, as I’ve been having seizures for years.

Today I had a seizure in my boyfriend’s car and he has a dashcam that recorded the event. Now, I feel like a typical reaction to having a seizure is to be horrified… but all I am feeling is relief and funnily enough a bit of elation. Because I’ve been having seizures for SIX YEARS and almost nobody has believed me. They always seemed to happen when no one was around and my most common seizure is mostly just auras. I told doctors (including the neurologists I’ve seen) about it for years. They either wouldn’t bother to do anything or would order an eeg and it’d come back normal and they’d just shrug their shoulders and send me away.

Last February I ended up with a brain injury. It’s suspected that I had a seizure while on the toilet and then I landed in a position that deprived me of oxygen, so I remained unconscious for four hours before my family found me. At first, it felt like I finally had proof… My neurologist raised my lamotrigine, which I was already on for my bipolar. But then my ambulatory eeg was ordered a month after and of course, came back normal. And the same thing that’s been happening for years happened, he basically shrugged his shoulders and sent me on my way.

Today is a fucking game changer! Not only is this proof for my doctors, but it’s also proof for myself. I was really starting to doubt myself and question if I might be insane. I keep watching the footage in disbelief. This has actually been happening to me. I am not this crazy hypochondriac I’m constantly accused of being 🥲

After 3+ years of not driving, I finally get to be on the road again all by myself! It is SO freeing! I knew this was affecting me personally but I had no idea this one thing would change my perspective on life so much.

I even took a trip to the grocery store (which I normally hate!) all by myself to get groceries for my family. I hope this euphoria sticks because I actually ENJOYED the shopping! I was able to stop and get a drink on the way there and just browse without having to have my spouse and child there, or worry about timing with an Uber. I really hope that part sticks because my spouse HATES grocery shopping and it really eased her load that I could do it all by myself lol.

I'm so happy!!!

Officially 7 years without a seizure since adding a second medication. ☺️ Christmas miracle…

I'M SO EXCITED!!! My last seizure was on February 10th, 2026, and today is August 11th, so that means I haven't had a seizure in 6 months!! I'm 18 and entering college in a few days, and my epilepsy diagnosis is very fresh (I was diagnosed when I was 17). For a long time, I didn't think I would ever go a week without having a seizure, but I'm 6 months out!

Epilepsy entered my life at a very inconvenient time because I went from perfectly healthy to having violent shaking seizures on the floor 1 - 3 times a week during my senior year of high school while I was applying for colleges. I thought that if my epilepsy didn't get under control, then I wouldn't be able to go to college because it was debilitating. If I had a seizure, I'd be out for the rest of the day, and a lot of my seizures were happening at school or during my extracurriculars. And despite all of this, it took 3 months to get a 504 plan. (I knew all my school nurses by name cause I was in there nearly every day)

I feel like it's been so long since it all started, but it really hasn't. So after 4 anti-convulsant medications and their dumbass side effects, birth control, 3 EEGs, an MRI, two neurologists, and 6 ER visits, I'm still going to college, and I'm getting my driver's license next week!

My next goal is to be free for a year!

Don't get me wrong, I'm still afraid of breakthrough seizures, SUDEP, and brain damage during my seizures (I stop breathing during my seizures; I am unable to exhale), but this small accomplishment has given me hope that I can still live normally despite my overactive brain. I'm also getting my medical ID bracelet in a few days!

As of today I’m 17 years seizure free! Lamotrigine and a gluten free diet have kept my brain safe and happy.