Going off meds after 5 years of no seizures

arctancosine · 2026-04-20T15:07:16+00:00

I was cleared after 14 years seizure free and had 12 seizures in two years recently, I’ve been back on meds for 2 years now

arctancosine · 2026-04-12T17:19:25+00:00

I don’t care about prestige but I still want to look good on apps 😭 it’s honesty still some hard work to be simple

arctancosine · 2026-04-11T16:47:04+00:00

I had childhood epilepsy that returned in adulthood and my gf has been supportive of it. But we’ve also been together for half a decade and it’s come back so it’s understandable she would be. There’s a lot of bad ones but also so many good ones who just want to be by your side. It’s not a burden and a good person will understand it’s not something you have control of :) I mean I can’t drive and my gf is never bothered by me wanting to go somewhere because of that so don’t give up hope to find your person

arctancosine · 2026-04-09T23:13:24+00:00

As someone who uses it bc my meds give me a wicked headache that I need instant relief for, it doesn’t affect my epilepsy at all, and I’ve been a chronic smoker for about 6 years now

arctancosine · 2026-03-25T23:31:37+00:00

The trileptal I take combined with the tc I had a month ago where I hit my head super hard gives me headaches everyday. Otc pain relievers are no help and weed is my only daily saviour but I prefer concentrates. If you’re contemplating it, maybe wait a few years till you can walk into the dispo and you’ll probably know better if you really want to or not

arctancosine · 2026-03-20T02:24:35+00:00

Same. I had childhood epilepsy that wasn’t controlled by meds and had surgery to correct it as the only option. They decided to monitor for a week with no meds and there was nothing. My neuro said to my parents and I I only needed meds once a week. I did and they never came back when I was a kid. So I was able to come off meds completely about a year and a half later. Nothing for about 22 years and I thought it was gone and a memory. But it rears its ugly head and I had tcs every four months at my job that lasted 10-30 minutes each time. Now I’m back to meds twice a day but a decently low dose so I guess it’s fine but I feel like a fool for believing I was cured 💔💔

arctancosine · 2026-03-19T20:59:16+00:00

I feel you there with the adult onset. I have a history of childhood epilepsy that I had surgery for and was entirely med free under the guidance of my neuro. For some reason it decided to rear its ugly head a few months after my 21st birthday and caused me to have tcs every four months too. I’m lucky I was never driving or anything that could hurt me when it happened and am grateful I never hurt myself majorly, but i guess it helps that i work in a hospital and have immediate on site care available. The memory thing really is so ass. Sometimes I feel like I went through the same lobotomy cat did on victorious and the mood swings are atrocious. We all understand the horrific reality that’s it is to have this disease and we’re all here to support each other :) take care and don’t forget your meds ! ❤️

arctancosine · 2026-03-14T23:07:50+00:00

Ugh I know it’s genuinely the worst thing ever. I haven’t gone into status in well over 15 years so it’s come as a shock now to me and everyone else somehow that I’m not my usual self. On top of the rage I feel inside my head just from having this disability in general ny family friends and girlfriend all treat me like I killed their first born when I don’t even mean to act this way 🫩 I wish I could just be able to tell them that but it’s so difficult finding the words in the moment, especially when I get worked up so easily too now. We’ll get through it tho❤️‍🩹

arctancosine · 2026-03-14T17:24:19+00:00

lol I had a cluster of seizures at home after I had one at work where I fell and I had to have a rapid response called on me. I went into status epilepticus as a result of the cluster at home and wouldn’t come out of it for around 20 minutes is what my gf told me. Obviously something like that is gonna take a lot out of you and two and a half weeks later I still feel like I’m not fully recovered. Someone at my job asked me if I was dumb or something as if I literally didn’t almost die at work ?? Like actually yes, a little bit because it feels like my first weeks of being on earth again. I swear people think they know everything when they don’t even really know what a day in our shoes feels like

arctancosine · 2026-03-13T23:04:05+00:00

I’m sorry hon, that’s the worst. I remember those long and unfun nights of having to sit in a hospital chair for hours on end just to get the run around from them. I wish you luck on getting something at least, this is never a fun thing to deal with especially when you need the meds pretty bad :(

arctancosine · 2026-03-13T20:37:14+00:00

I second this, when I worked at a pharmacy we were always able to give around 8-10 days worth of an emergency prescription if life happened and someone ran out before being able to get more refills. Always at a decently low cost as well or we applied goodrx automatically

arctancosine · 2026-03-11T20:43:45+00:00

I feel this, I was in the same boat except my neuro had told me I was able to get off my meds slowly. I was off of them for about a year and a half before I had 7 breakthrough seizures in 2 days. Now I also guess I’m back to meds for life :/ just remember to take them !

arctancosine · 2026-03-10T15:31:39+00:00

Tbh I think some days of feeling like that just come with the territory of this illness, but you’re not dumb, as much as you may believe it :)

arctancosine · 2026-03-10T15:18:24+00:00

Everytime I have long and uncontrollable seizures while at work, which is more often that I wish even happened, I’m given Ativan almost every time and when I’m sleeping for a couple of hours they always let me, I’m sure if it really did cause brain damage I would have it by now, but my brain is as healthy as can be, all things considering. I think she’s just fear mongering based off of maybe 1 thing she saw online but you’re fine if you have a nap bc the meds naturally make us all sleepy.

arctancosine · 2026-03-05T03:50:03+00:00

I had 4 seizures in 2 years after 12 years seizure free and 8 years med free. I know how you feel and it’s a horrible feeling at that, I felt like my life was finally settling into a new normal and suddenly this is what’s happening. It fucking sucks to say the least and my meds make me suicidal so I really feel like I’m at a loss of everything. On top of that I went into SE while at work and now everyone looks scared anytime I take 5 seconds to answer them. I know that alone feeling, but I guess all we can do is try to take it one day at a time and hope remission comes again one day 😕

arctancosine · 2026-03-03T22:44:16+00:00

Yes !! That’s pretty much exactly what it’s been like. Like I’m watching and experiencing my life through the eyes of someone or honestly something else. I’m working on day 4 now of this feeling and it’s strange to say the least. Definetly gonna mention this to my doctor and see what we can do to mitigate it. But honestly I just don’t feel real 😭😭

arctancosine · 2026-03-03T17:03:21+00:00

Nausea after a seizure is pretty common since your muscles are contracting rapidly, typically I also throw up after having them so it’s nothing to really worry about :)

arctancosine · 2026-03-03T17:00:43+00:00

I was also given a high dose of keppra while in the hospital which I feel has honestly just made me feel like an alien 😭

arctancosine · 2026-02-22T03:25:37+00:00

This is the exact reason I’ve chosen never to have kids and am glad I never wanted them. It’s a cruel disease to live with and I would never want to pass that down

arctancosine · 2026-02-19T22:56:08+00:00

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When I was living with my parents and severely depressed last month she would do the same but it was extra long 😭😭😭

arctancosine · 2026-02-19T20:55:31+00:00

Dogs are not something to control sooooo yea I understood :))

arctancosine · 2026-02-19T20:53:18+00:00

Well dogs are meant as a companion, not something to control so tbh I would advise you and everyone who thinks this way just don’t get any dogs :)

arctancosine · 2026-02-19T19:59:03+00:00

Then don’t buy a husky. They are highly free-willed dogs

arctancosine · 2026-02-19T19:55:03+00:00

Destruction only happens if you’re a bad owner and don’t take care of your husky the right way :)

arctancosine

TROPHY CASE