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

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.

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

Bumping, for the Saturday night gang

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

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.

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.

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.

Thanks to all for taking the time to reply. Some positives, which is great. I'm going to go from watching him like a hawk hoping for no more seizures, to watching him like a hawk hoping for no mental health crises.

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.

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.

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

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 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.

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

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

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.

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.

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.

I am so, so sorry. This must have been a shock. Thanks for the advice, I will be purchasing and pillow and discussing this further with the consultant xx

Thanks, I'll have a look at that website

This is really useful, thank you. I'll ask about bone density, thanks for the heads up on that

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

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

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.

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.