When they say anti seizure medication 'pre... - Epilepsy Action

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When they say anti seizure medication 'prevent seizures from happening' what EXACTLY does that mean?

KaiKai_B profile image
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I haven't had a tonic clonic seizure since 2022. I have still been having focal seizures which are much more under control since the introduction of lacosamide. Last night, I woke up feeling incredibly odd and quite sick and how I remember feeling leading up to a tonic clonic pre medication. I shut my eyes to try to go back to sleep and suddenly it was like I was in a rave. I had flashing colours in my eyes and felt awful. When it stopped I was terrified and could barely move (partly out of fear, partly because I certainly felt post ictal). what I want to know is when they say that anti seizure medication prevent seizures what do they mean? The word seizure is used to describe such a broad spectrum of things it's difficult to know. The majority of my seizures are focal BUT I have had 3 tonic clonics which finally lead to my diagnosis. I also suffer from non-epileptic seizure disorder and have a tendency to overthink thanks to ADHD so I just need some clarity as to what happened last night because I certainly FEEL like I had a tonic clonic but without the full 'bells and whistles' but I don't even know if that's possible.

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KaiKai_B profile image
KaiKai_B
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3 Replies

I have absolute Focal's, so know what you mean. Forget about the "naming of a seizure type event". You know it was seizure related, the fact that it wasn't a full blown event? Can be ignored, other than taking control I.e. if it's a frequent event, speak to the Dr, increase or change medication, or perhaps verify whether it's prompted by timing and/or provoking issues

I'm fortunate in having periodic szr events. May sound absurd, but I actually find it reassuring to having "all night, exceptionally intense, nightmares, throwing the duvet off". Because on checking dates, such routinely conform to a precise seizure related, event date. And feels fantastic, that all I've had, has been a nightmare, rather than a full blown event. Proof that medications are working and can safely cycle, use the gym or whatever, for X week's !

Hope you find the Lacosamide ok. Asking too much, but how do you find it & how long have you taken it? (Nb. I was on it for 2.5yr's, withdrawing from Jan '24 onwards)

yogastrength profile image
yogastrength

Hi KaiKai-B, I agree with what24. My seizures started as focal seizures and then had a tonic clonic which also led to a diagnosis15 years ago. My seizures were managed at first but I became so de-personalised, I was not very nice to live with so changed the meds after 7 years. I was seizure free though on the first lot which were Topiramate Levetiracetam, full dosage. Since then is another story, I have 3-4 focal seizures once a month, luckily in the night and they start with the aura like feeling....quite a nice feeling, but after the seizures, I lose 3 days, sleeping, horrible headache and can't taste or do much and with the deja vu and emotional feelings, it's crappy! I was diagnosed with ADHD nearly 3 years ago as they can go go hand in had with epiliepsy, Yay! I wondered why my life was weirder than other peoples and I am 64!

Talk to your neurologist, there is a new medication out called "Cenobamate" which I have been taking for 3 months. I still have seizures monthly but the last lot were milder and recovery was quicker and I am only on a third of the dose as yet. Stress is a huge factor I might add.

No one seems tto mention the "de-personalisation" that the meds can do. I wish you all the luck in the world with Lamotrogine, it's a very kind med to the body but was not strong enough for me. I was down for the operation but found out that you still have to be on meds after.

Warm wishes, Cherry.

Mybraveface profile image
Mybraveface

youtu.be/YMOjfxfzEO4?si=LQT...

During recent problems to try understand why the medication I had been switched onto wasn't working, and giving other problems I found this video which I found very useful in helping understand why the medication wasn't working.

It basically answers your question in very simple terms! I wish you the best of luck in your health 🙏

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