Is anyone on Levetiracetam?

[runwithme]

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

My mother was on it for a couple of years and had no side effects except it made her very sleepy at first. We switched to giving it to her in the later afternoon so she was more awake in the morning and we started her on half the dose and built it up. When we got up to the prescribed dose the sleepiness had worn off.

My husband has been taking Levetiracetam for 2.5 years and is now on maximum dose.
It didn’t full control his focal seizures just his TC ones so he takes another anti seizure medication alongside it.
Dose increases he feels really tired for a couple of weeks and eases.
He takes B vitamins as well to help with mood. No side effects otherwise and it’s a really effective drug.

if you look at the side effect of paracetamol, ibuprofen and other over the counter medications you wouldn’t take them.

People on forums predominantly post when they have a problem…not when everything is working ok.

Being diagnosed with epilepsy is huge.
its turned our life upside down as my husband had his first seizure 2.5 years ago.

we are in a new normal and life is good.

hope your son is ok xx

I've been on it for over a year now. I only properly get the "keppra rage" during a dose increase - it makes me a little irritable for the first couple of hours after taking it but nothing unbearable. Dose increases are ROUGH though.

It works really well on my seizures most of the time, still titrating up to find the right dose but it's generally pretty reliable.

OP, I just reread your post and I didn’t answer your question before re overkill…

No, it’s not overkill to medicate the epilepsy. Seizures can be dangerous and also feel embarrassing. I hate the “walk of shame” through the office the day after. Yes, people aren’t going to “judge”, but everyone I barely know has seen me at my most vulnerable and of course it changes people’s perception of you. If you can help him avoid that during adolescence, while he’s finding himself, probably better.

And it’s not necessarily for life. If he goes a few years seizure free he can try coming off the drugs. Lots of people grow out of epilepsy. In fact I was reading an article by Hadley Freeman the other day where she said she’d “grown out” of it aged 42. It is very linked to emotional and physical state - stress, alcohol and tiredness can make it much worse. But (contrary to what my MIL says), it’s not a good idea to try and treat only with yoga and homeopathy.

I’ve been on levetiracetam for about 4 years now.

My seizures happen infrequently, about once every 8-12 months, and each time I have another one my neurologist increases my dose again.

I’m now on the maximum dose of 3000mg a day and if I go on to have another seizure they will take me off it and try something else.

I have never had any bad side effects from the drug.

Can I also add that anyone with epilepsy can contact the amazing charity SUDEP Action for guidance on reducing the risks.

My son was fit and healthy, apart from having epilepsy. He went to the gym. SUDEP happened to other people, we thought. People whose seizures aren’t controlled or are more frequent. His death was also my death is so many ways. Please do what you can to reduce the SUDEP risks.

I'm so glad you posted, because you've raised awareness and I'm looking into doing what I can to avoid this. So thank you, so much. Again, I'm so sorry for your loss xx