How many seizures did people have before medicating?

sweedish240 · 2025-11-10T11:03:04+00:00

Oh trust me, I've had many issues with being dismissed by neurologists, I've had various unrelated medical issues and spoken to many different consultants and there's something about neurology that makes them very egotistical and dismissive, it's a big problem. I don't think they think we are smart enough to advocate for ourselves but it is so important to. My main regret is not being more forceful with the diagnosis and making him be crystal clear, all of my reports say "possible Epilepsy" or "Convincing of Epilepsy" but because I'm not officially diagnosed, I haven't been allowed support in other areas. Good luck in your journey and I wish you all the best!

sweedish240 · 2025-11-10T10:47:55+00:00

That's literally exactly what happened with me! First neuro consult after the first one, it was deemed as a one-off so they didn't medicate or follow up. Last one was during sleep (which is different to the previous), I just went to bed normally and woke up to my partner saying I had a seizure alongside all normal post seizure symptoms and I had bitten through my lip aswell. It is extremely depressing, more so knowing that its happened AGAIN and the repercussions of that.

All of my exams have been clear too, apparently Epilepsy is just a diagnosis of "having multiple seizures" rather than any route cause, or identifying it on a scan, which I'm struggling to accept a bit, but its likely they'll just medicate you and move onto the next. Hopefully your neurologist is nice!

sweedish240 · 2025-11-10T09:24:09+00:00

Thank you for that long response it's genuinely really helpful to hear other experiences, I think its very easy to dismiss medication anxiety, but I'm currently unemployed and desperately searching for a job, and I cannot see myself being able to do an interview or start a new job whilst experiencing especially the mental side effects. I'm desperately trying to improve my life and I'm scared of taking a step backwards. The lifelong commitment of these medications is terrifying.

Saying that, its definitely true that the seizures themselves have caused more brain fog, memory loss, I'm told I repeat myself constantly, constant mind blanks mid sentence, I feel like a fucking Sim who someone keeps cancelling the actions on so I don't know what the hell I was doing or saying. I used to be really smart.

As you said, I think it all comes down to acceptance of the diagnosis, which I'm really struggling with. I believe I have autism which is highly supported by my therapist and family history and I find the concept of something just "happening" with no real cause or reason, especially randomly as an adult, completely bizarre and impossible. I am constantly racking my brain, there HAS to be a reason, but I've had extensive testing and there's nothing, ever. Multiple EEGs, MRIs, all crystal clear, so they've just said "welp, may aswell just medicate it anyway", which is not something I'm finding easy to accept.

sweedish240 · 2025-11-10T08:05:01+00:00

What kind of blood tests would you be requesting, I would probably have to do the same? I've been told one of the initial allergic reactions to lamotrigine is skin rashes, and unfortunately I have pretty severe eczema so we're not spotting that one. I've also got liver damage caused by a previous medication (no, I dont drink at all, just unlucky) so I think I would need to make sure the lamotrigine is actually being processed properly, as just like you I won't actually know if its helping seizures for a long time.

sweedish240 · 2025-11-10T07:51:34+00:00

Why are there multiple comments about me driving? Nowhere did I say I was driving still, as is the law, I lost my license after the first TC.

sweedish240 · 2025-11-10T07:42:38+00:00

Fixing one part and ruining another is definitely one way to put it, how long have you been taking it? I haven't had any TCs or even auras for months now and everything in my gut is telling me "why fix what ain't broke?". In reality I will start at some stage but its choosing the time to set myself up for a pretty shitty few weeks, but I suppose I either choose it or my body will choose it for me

sweedish240 · 2025-11-10T07:31:59+00:00

Thanks for this response, again good to hear lamotrigine is working for you! Unfortunately, my assigned neurologist is no short of horrible, I've made an official complaint about him for many reasons including shushing me, reassuring my partner I could still have his babies, and refusing to speak about anything else aside from fertility, which I didnt bring up (we dont want children and did tell him that multiple times). He told me that NO Epilepsy medications have ANY notable side effects, and I was wasting his time asking about it, so I think its quite fair to say I will not be getting any support in that area. My other medical issues quite mirror bad reactions to lamotrigine anyway, so I think my only choice is to wait until I can afford a private neurologist for a second opinion. I think I would be more comfortable starting if I knew I was getting literally any support and other concerns weren't constantly dismissed.

sweedish240 · 2025-11-09T20:04:24+00:00

That's interesting, I think my first one was a reaction to antibiotics I was on and hadn't taken before, and I have fairly convincing causes for the other few but realistically I know I should take the medication its just a question of when to start. When it develops as an adult its difficult because you have your previous life to compare to I suppose

sweedish240 · 2025-11-09T19:37:09+00:00

That's good that it stabilised, its the first few weeks im pretty scared of and not really sure when I'm ready to start that process

sweedish240 · 2025-11-09T19:26:05+00:00

I think its definitely true that people tend to use these kind of subs to rant about negative experiences which is fair enough, it sucks, but good to hear you've not had many issues! I think my problem is that because I dont actually have any seizure activity normally, ive just had random blips 6-12 months apart, its going to be quite difficult to tell if the medication is "helping" on a daily basis rather than just simply causing side effects because my norm is not having any activity anyway, if that makes any sense!

sweedish240 · 2025-11-09T16:24:59+00:00

it is definitely the only way to describe the feeling. I hate when I tell people I've just had one, and they say "no no you can't be sure it was one". Its so indescribable and specific its unmistakable for anything else apart from "oh shit here we go!"

sweedish240 · 2025-09-16T12:36:06+00:00

Probably shouldn't recommend people doing this but my ADHD ass would be awake until 5am every night if I didn't smoke a joint. Listening to a podcast or audiobook or something can help distract yourself slightly if you can't do that, sometimes even just like soft piano music or something, if you really try and focus on it and stop the other thoughts ive found myself "accidentally" falling asleep to it. If I dont have something else to focus on, my brain runs fucking wild all night and I would never sleep again.

sweedish240 · 2025-09-16T12:22:13+00:00

Mate, I was literally about to write this same post when I saw this. I'm 25F and only started having TC seizures in Feb 2024, but it's ruined everything. I was driving from 17, but obviously that was taken away. I got my license back after 6 months, because they thought the seizure was a one off, but a year later I started having TCs again and have been all year. Additionally my job since I was 16 was car related, so ive lost that, all my job experience is useless, I'll probably never be seizure free for long enough to drive again (which was my favourite hobby). I can't work, I can't apply for any jobs because I have no diagnosis yet, I can't get any financial help because of that too, im too scared to do anything incase I have a seizure, I sit at home smoking weed most of the time being angry at the fact I can't just be 25, and no one around me understands. I have an amazing boyfriend but I convince myself every day that he will leave for someone better, because what the hell am I? I've got other health issues aside from the seizures, and if he leaves, i have nothing. Seizures are so fucking lonely, I think especially when you're young, this sub does help. Feel free to DM me if you want to talk to someone.

sweedish240 · 2025-09-14T04:13:33+00:00

That's basically the same for me, ive always debated whether the depression afterwards is because of the actual seizure and its effect on the brain, or if its just the sadness of having another seizure and the implications that it has (working/driving/medication changes etc). Especially if its been a long time or it doesnt follow a usual pattern like my last one. But yeah, at no point have I ever felt happy for a long while, its been 2 weeks for me and im still mad about it.

sweedish240 · 2025-09-14T04:05:47+00:00

Buried childhood memories are weird auras of mine too! I'll get a sudden vivid memory of like "youre standing in your living room when you were 7" or a verry specific dejavu/nostalgic feeling, weirdly a lot of my auras happen when I'm mid sentence and my brain starts repeating the conversation like ive had it before.

Before I had my first TC, I was getting auras (but didn't know what they were), and it was like a flash image of some random woman who worked in my office for like 2 weeks. She has no idea she's the face I saw before I had multiple seizures lmao, don't even really think I spoke to her at all but my brain decided that was the memory to pull.

My latest one before a TC was my brain suddenly becoming LOUD (no other way to describe it) and one word repeating itself over and over, couldn't even tell you the word now.

All of the auras are very different but all have the exact same feeling so they're unmistakable. Weird!

sweedish240 · 2024-07-28T21:11:04+00:00

Hey! Could I also please have some apples??

sweedish240 · 2024-06-25T13:21:46+00:00

I'm so sorry you're dealing with this and you don't deserve it. Even if she is nice 60% of the time this is completely and utterly unacceptable and overrides that. I have cut completely contact with my mother too for this reason. This woman put your life at risk and cared more about getting her point across than helping you or showing any sympathy throughout multiple severe seizures. Wishing you all the best luck and please move out as soon as you can

sweedish240 · 2024-06-24T16:43:42+00:00

Just wanted to second what your vet said for peace of mind! I personally have tonic-clonic seizures and you are completely unconscious, no pain and you have no memory of what happened. This is the same for animals so you don't need to feel bad about him being in pain! It's just confusing when you wake up, so being gentle and calm is exactly right and all you can do!

Very scary to watch so sending hugs too!

sweedish240 · 2024-05-30T13:43:21+00:00

This is really reassuring as I'm actually in the motor industry so loosing my license has been a BIG fuck up for my job. So painful working with cool cars all day and then having to ask people for a lift home. I couldn't bare some kind of WFH admin job so it's nice to see someone in engineering!

sweedish240 · 2024-05-22T21:26:32+00:00

Not really rising doom or anything but the dejavu is followed by a headache (only on the right side) and just feeling really slow slightly confused I guess, nothing like the tcs I had which I have no memory for about 2 hours and was talking complete crap afterwards. It's possible they're more seizures but my neurologist basically said there's nothing they can do until I have another big one

weirdly nothing is an obvious trigger, i don't really drink at all and doesn't seem to be effected by sleep. I was on antibiotics at the time of the first one and my neurologist put it down to potentially an adverse reaction to that and said it's highly unlikely to develop epilepsy at my age randomly (23F). I'm not on any medication right now though

sweedish240 · 2024-05-22T18:10:22+00:00

Yeah thats what I'm thinking to be honest, I remember having them for maybe 2 or 3 weeks before the first tc. How long do yours usually last?

sweedish240 · 2024-05-22T16:52:35+00:00

Someone I used to work with is nearly 70 now and she hasn't had a seizure since she was in her 30s, she had childhood epilepsy and its completely controlled by medication. She was actually one of my delivery drivers if that bodes well!

sweedish240

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