Is anyone on Levetiracetam?

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’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.

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 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.

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

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.

Yes. Currently on 1500mg twice a day plus 200mg of lamictal/lamotrigine, and still having a seizure every other month. Needless to say it doesn’t work great for me but who knows, maybe I would be much worse without it.

I was on epilim/sodium valproate from age 11 to 27 and that worked brilliantly for me - I went up to 3 years without seizures and even started learning to drive. In retrospect I had a lot less energy than I do now and was kind of puffy-looking (though have always been slim). I’m not sure I’d go back to those side effects.

I changed to keppra because I was trying to conceive, and I’m glad I did because epilim is so dangerous for birth defects. Newer research suggests even fathers on keppra lead to higher risk of birth defects.

I actually tried keppra twice. The first time after 6 months I was still full of uncontrollable rage and feeling suicidal so went back to epilim for a while. Second time my neurologist added lamictal and I haven’t had the same side effects at all. But my dosage is very high and once I am done with kids my neurologist says there are a number of newer drugs similar to keppra but with less rage that we can try.

Some advice: Try different neurologists if you have the ability. Some will treat you like anything less than weekly seizures is nothing to worry about. Others care about the side effects and will work with you until a good solution is found.

My son is on 500 morning 750 night. He has had 8 seizures in 15 years. He has been on it for 3 years now. He says it reduces his anxiety. We were worried about anger and depression but thank fully he says he hasn’t experienced that and we haven’t noticed a change. My friend is also on it (last 20 years) works well for her too. 2 of my sons seizures were life threatening. So medication is the best thing for him and we are relieved it works well. Good luck.

So sorry you are going through this.
I would share your concerns with an epilepsy specialist nurse if you're struggling to get hold of a neurology consultant. Epilepsy Action have an excellent helpline.

Levetiracetam can cause emotional side effects, for me these were depression, hallucinations and extreme anxiety. The titration process to another drug can be slow and cause a temporary increase in episodes whilst taking place.

Ultimately, all drugs have side effects, it's working with an expert to find the right combination for your DS.
Hope your journey becomes less stressful as this will hopefully reduce episodes too

I'm so sorry to hear this. This is my biggest nightmare since my son was diagnosed. He has mainly seizures from sleep.

My son was on this, and had to be given a lower dose, due to rage and depression. They introduced a B vitamin which helped counter balance it.

Please make sure you are taken seriously by neurologists. My son passed away from Sudden Unexpected Death In EPilepsy (SUDEP) shortly after his 19th birthday. He was well controlled seizures, about one every 14 months. We did not expect that he was at risk of SUDEP because of this. Please ensure you have the anti suffocation pillows etc and talk to neurologists about SUDEP risks and preventative measures.

Everybody's different. I went on levetiracetam after I developed clonic seizures of the neck following mumps as an adult. I didn't suffer any of the side effects.

I was on keppra and unfortunately didn’t get on with it. Really angry and irritable (everyone and everything got on my nerves). Eventually changed to Lamotrigine and had an instant reaction extreme itchiness. So had to stop that. Now on carbamazapine which now is well controlled. It takes a while to get used to meds and the right doses.

Btw check out Young Epilepsy, it’s been a lifeline for my son. Amazing little charity

Look up keppra rage, it's a known side effect

My son started having seizures at 14 and started leviceteram. He did have some anxiety after a while but hard to untangle meds vs school/gcse/hormones. He swapped to breviceteram for a while but had less good seizure control. Again hard to tell if brivaceteram was less good or seizures worsening - I now suspect the latter. Swapped back to leviceteram and all ok but he takes loads more as well now. In short, try it and see, there are many many different things to try if it doesn’t suit him or give good control.

Hi I was put on it late twenties when started partial seizures a few months apart in a year out of nowhere with occasional night time seizures (wouldn’t have known the partial seizures were that without the visible seizures seen when asleep/ just felt odd and unwell and strong Deja vu) and still on it 18 years later. I was initially put on lamotrigine which didn’t stop the pattern but the keppra totally halted it immediately., Allowed driving license back (if diagnosed needed two years seizure free) ., was second neurologist at national hospital neurology in London who put on keppra after night time eeg study over two days/ nights who was very reassuring about the drug-,said I might be a bit “bitchy” initially on it but would settle (wasn’t warned of worse than that)and it is considered a modern drug with far less long term side effects or risks than many others. I don’t think it’s affected my moods and I was wary initially but nothing felt off. I’ve stuck with it as the risk of coming off it is seizures return snd apparently drug might not work again after a break. First neurologist confirmed epilepsy without any abnormal readings on brief eeg or mri etc just on symptoms - second found the evidence if you like. Did say that drug could settle it like a reset and not really need for life but risk of withdrawing drug to test was too great overall., might be worth asking about any impact on bone density over time - suspect women more at risk but could take suooorkt if dr advises (not flagged to me until too late- can potentially affect calcium uptake but risk worse for women due to hormones also impacting plus not all drs agree on this effect for this drug).

My son was on it in combination with another med. He also had adhd and the epilepsy started around puberty so the rage wasn't any more noticeable than adhd symptoms. He stopped taking it and has recently started again, we've not noticed any of the side effects. His adhd behaviour has calmed down loads too.

Levetiracetam is something that tend to try first, since Epilim has been found to cause birth defects. If there are side effects they can try other meds

It's so hard to go through this as a parent. Our dc was put on this after having three seizures within a couple of weeks. He had an mri, an eeg and a sleep deprived eeg scan (apparently that can pick up different brain signals). All of them came back clear. We still don't know what has caused this. He had these seizures at 8 months old and it took 3 months and more seizures until the medication started to take effect. He's been seizure free since then though which has been over a year. As he is a toddler I can't tell how he personally feels on this but he is very happy and active. He doesn't show any aggression or frustration beyond normal toddler like levels.

There are other types of medication and it can be trial and error with finding out what works.

I take it in combination with epilim and have done for over 20 years. No issues with mood other than normal grumpiness.
Any new drug in the system will affect a body and all of us react differently. Keep an eye on him.
definitely better to have seizures controlled than not in my opinion.