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AED Meds Worsening Seizures

A MyEpilepsyTeam Member asked a question 💭
Somwhere. EA

Hello everyone . Has any of you had a bad experience with ADE meds, meaning that they end up worsening the seizure activity instead of reducing it. I'm already at the 3rd med that did this and I'm already starting to get worried. I know that worsening seizures is a side effect for all antiepileptic meds, why that happens is beyond my comprehension. Anyway I know this is a rather rare side effect, for example in lamotrigine it's a 1/10000 cases incidence which is very rare but... what the hell… read more

January 15
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A MyEpilepsyTeam Member

Thank you all for your replies, I did not expect this to be so common side effect and I truly appreciate your replies .After talking with my neurologist yesterday we decided that I should reduce the amount of Lamotrigine I take to a point where I feel slightly comfortable. But as we talked I realized that I am in a pretty bad situation because I definitely do not respond well to meds and there can't be much done. I was told to see a psychiatrist as I also have ADHD and maybe that medication will help prevent or at lest reduce the seizure activity.
@A MyEpilepsyTeam Member believe me I hoped these were PNES episodes, it would have been a lot easier to manage but although the EEG is normal I always had inner mouth biting and post ictal confusion after an episode, definitely inconsistent with a PNES episode, an epileptologist confirmed these were actually tonic seizures and not psychogenic attacks and referred to that cyst as a possible cause but without any actual means to pinpoint it's implications. The weird thing about my situation is that people hardly believe how bad my situation is, I haven't had a seizure in years, but the focal seizure activity is over the roof as I can hardly walk without feeling rising sensations, out of body sensations or feeling my legs sinking in the ground or just being all over the place. As long as they do not SEE the actual seizure they do not take any measures. In these years I took great caution to avoid any triggering situations but to no avail, I believed I wasted my time but seeing how meds work I believe it was the right decision, at least I enjoyed some years of peace. I know that compared to many of you my situation is not that bad, although I always feel at the brink of a seizure at least there are still low chances for it to trigger but in a couple of years if nothing improves they will actually trigger out of the blue unprovoked. That's what I'm trying to avoid and seems that there is nothing I can do about it.
@A MyEpilepsyTeam Member yes you are right with age the seizures seem to get worse and worse, I was 18 when I had my first seizure, now I'm nearly 28 and each year the seizure activity got worse and the pattern and triggers seem to change. It seems like the brain gets self-destructive and gets more and more messed up.

January 16
A MyEpilepsyTeam Member

Your profile says EEG does not confirm epilepsy, so how do you know you don’t have PNES (Psychogenic Nonepileptic Seizures) or similar? Or that it is actually an effect of the cyst you said you have? If you don’t actually have epilepsy, epilepsy meds won’t help you. You might want to find a more competent neuro-surgeon, specifically, to consult about that cyst.

Other than that, you might try a ketogenic diet, and/or mindfulness meditation.

January 16
A MyEpilepsyTeam Member

I am currently on Levetiracetam 1500 mg-BID, Lacosamide 200 mg. BID
Lamotrigine 75 mg BID
Whenever seizure happened my neurologist just raise the dose.
One my experience is that with growing age episodes of seizure also increased, because neurons take more time to recover, in the mean time another seizure episode happens, so please look your age as well.
Have best wishes for you.
Thanks

January 16
A MyEpilepsyTeam Member

I had a similar experience. I had to wind up going off of several meds bc of it and got switched a lot. I'm on nuerotin and 2 others I can't seem to pronounce or spell lol. It took a lot of trial and error w meds to get here.

January 16
A MyEpilepsyTeam Member

I increased my Lamotrigine from 150mil to 200mil over the weekend and had a seizure. Not sure if this had anything to do with it?. I feel really tired with it.

January 16
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