Is anyone on Levetiracetam?

32 replies

runwithme · 10/05/2025 18:09

DS has had two seizures in 2.5 years. Following an eeg after the first one it was decided that he didn't have epilepsy. The 2nd one was a few weeks ago, he hasn't had an eeg or an MRI but the neurologist said he has epilepsy due to his history (also 2 instances of almost delusional behaviour, whilst unwell).
As a result he has been prescribed levetiracetam. Whilst it's a relief that he is going to have something to stop this happening, I am worried that it's not necessary and that the side affects of mood swings, anger, aggression and suicidal thoughts are going to really affect him, perhaps more than a seizure would. He hasn't suffered from mental health in the past but he keeps his feelings to himself and doesn't show much emotion.

I've read lots and lots of negative stuff but is there anyone who can reassure me? Also, do you think it's overkill, having had just 2 seizures in 2.5 years?

He is 16, and on 250gm per day for 2 weeks and then 500gm for life.

Please no flaming or jumping on me. I'm posting on here for traffic, not for a debate or any criticism

OP posts:

drspouse · 10/05/2025 20:42

My DS was on it for a few years. Didn't affect his behaviour (though TBH we might not have noticed as he has fairly severe ADHD).
Like a PP it didn't stop his seizures but the new medication (Lamotrigine in his case) has helped.
He does get atypical absences which sounds like your "delusional". He wanderers around for a couple of minutes saying Mummy Mummy or trying to sit on chairs that aren't there.

Serencwtch · 10/05/2025 20:39

I had a horrible experience on it. Sudden anger & uncontrollabe anxiety & suicidal feelings. It didn't go away completely when I stopped taking it. I've met many others whose lives have been ruined by it - some turned out not to even have epilepsy.

Bear in mind though that epilepsy can be serious & even fatal so the consequences of not treating it could be worse.

You need to have these conversations with the consultant.

I personally wouldn't risk taking it without a confirmed diagnosis & understanding of the type of seizures.

MrsPinkCock · 10/05/2025 20:27

Mine is on 4,000mg a day! Plus 500 of another drug.

Hasn’t made a jot of difference to his epilepsy, but he hasn’t had the rage or suicidal side effects that everyone worries about either. He had horrific brain fog though for the first few weeks and couldn’t hold a conversation - everything had a 3 second delay…

Trying a third medication shortly as the first two haven’t worked. Still has seizures every 3-4 weeks.

pinklemonade84 · 10/05/2025 20:18

My little girl was on it from the age of 8 months through to about 5 years. We didn’t notice any ill effects in the duration of her taking it

Original poster

runwithme · 10/05/2025 20:05

Bumping, for the Saturday night gang

OP posts:

Original poster

runwithme · 10/05/2025 18:55

Thanks @fallingandlaughingGlad to hear it wasn't as bad for you, it gives me hope. I hope your new medication is working for you. X

OP posts:

fallingandlaughing · 10/05/2025 18:26

I was on levetiracetam for a while. I did notice that I was more grumpy and reactive, but it wasn't extreme. It wasn't like a personality transplant.
I changed to carbamazepine as levetiracetam didn't stop my seizures. I would have stayed on it happily if it had.
If your son finds the side effects too much there are loads of other meds he can try.

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