Any experiences of Keppra/Levetiracetam

[TheOGWanKenobi]

Hi, I've posted in AIBU as well as health as I know from experience you get more replies!

I currently take max dose of lamotrigine for tonic clonic seizures but unfortunately they aren't controlled at present. My neurologist wants to change meds so is gradually adding in Keppra to titrate up to max dose. I've resisted changing meds up to now as I believed a period of recent stress was the trigger, but I'm less stressed now yet the seizures are still happening so I have accepted there needs to be a change.

I've not read many positive things about Keppra and side effects however so would be reallly grateful for any MNer experiences. (I've tolerated the lamotrigine okay apart from wanting to eat everything in sight and falling asleep when I'm not eating!)

Following as I'm in a similar position. I am on clobazam and they want to change me to Keppra and I just read the worst things. I am seizure free on clobazam but they are worried about me getting pregnant on it.

Hi I was on 1000mg a day of Keppra, for 4 months, after having seizures, after brain surgery. I was then weaned off over about 2 months. I didn't have any major side effects, although looking back my mood was flat and quite low. I didn't have much interest in things I'd previously loved, such as horse riding. I'd take it again though if the seizures returned.

I'm so sorry - I posted in AiBU as well as health for traffic, and I just saw these replies!

@anna114young That sounds like a difficult decision. Funnily enough one of the "selling points" my neurologist made when I was reluctant was that Keppra is safe enough to be licensed for pregnant women. (I'm not and won't be in that situation but it must be hard for those that are). Could you swap to Keppra but return to clobozam later if it has worked for you?

@Mistymountain I hope you are OK now? I think sometimes it's just so hard to know what feelings are side effects and what feelings are just a reaction to a crappy situation.

My seizures are tonic clonic but always from sleep, I've never (touch wood) had a seizure when awake, so I am able to have a driving licence now (I had to surrender it for a few years) The neurologist said a meds change wouldn't affect my licence entitlement, but if I had different seizures I would have to declare a meds change to DVLA.

It's all so tricky. I've had a couple more seizures though (no serious injuries luckily) so have decided I will accept the Keppra change and see what happens - at the moment I feel the risk of the seizures is higher than the risk of side effects, I really don't want to be a frequent flyer to A and E atm as the NHS has enough to deal with!

And @anna114young I forgot to say I'm sorry I can't link atm as I'm on the app but my (identical title) thread in AIBU had quite a few responses which may be useful for you?

(I really dislike using AIBU for traffic - I remember when AIBU was introduced, before it was Fight Club but it gets replies!)

I've been on Keppra for the last 2 years following brain surgery. DH was really nervous about me being on it initially as he read how it can turn people homicidal...but actually I've been absolutely fine and have noticed no difference in behaviour or temperament whatsoever. I'll need to be on it for life, and am happy to do so

I thought I would update for everyone who kindly took the time to reply to me.

I started the Keppra two weeks ago and just have titrated up to a morning tablet as well as evening. So far I fucking hate it I am so tired I could sleep 23 hours a day. (I do have fatigue usually due to another condition so am used to living with it and have adjusted my life, but this is a different level!)

A few other side effects have been manageable - not being hungry but this doesn't bother me as I can just pick/graze and it doesn't matter if I lose a few pounds at the moment. I have felt down, but I had such a shit year last year anyway I think this is normal and I would take a bit of a dip in mood as a trade off for no seizures anyway. I am feeling a lot of deja vu/jamais vu which is unpleasant but this usually heralds a seizure and they aren't happening so I can cope with it. I think this may be inter ictal activity rather than a meds effect.

I haven't had any more seizures so that's good, but the exhaustion! And it's not a "good" exhaustion such as that stretchy tired post exercise feeling, if that makes sense. I just want to sleep all the time. I'm very lucky in that I'm not working atm and DH has adjusted his hours so he is here more which helps a lot, but I cannot bear feeling exhausted every single minute. I have so much I want to do, but I am doing nothing.

I think I just want someone to say stick with it and it will get better - I don't want to ring my epilepsy nurses for this as they are so overworked though.

I didn't mean to do that emoji face at the end!

Hi I replied to your first post. From the facebook page I'm on, some people do seem to experience severe fatigue from Keppra. What seems to have worked for people is going back a step, and reducing the dose again or changing medication, I've seen Brivaracetam mentioned. You will need to talk to your epilepsy nurses though; I'm sure you won't be wasting their time.

Hi, my husband has been taking Keppra for about 8 years. He does get very tired but nothing like the debilitating fatigue that he suffered in the early days. He takes it to stop seizures following brain surgery but he still works full time in a physically demanding job so it hasn't stopped him living a normal life. He seems to cope quite well on it.

Sorry this dropped off TIO! Just to report I am still taking the Keppra, unfortunately had another seizure yesterday (very annoyed as I bit through my lip so it hurts to eat or smile!) but I'm still titrating the Keppra up, hopefully it will start working. Still knackered! But have been taking my vitamins etc. I have a neuro appointment next month so it will be good to have it reviewed then. Hope everyone else is keeping well

Hi everyone, this thread is really helpful.
I was put on keppra in October after being diagnosed with a brain tumour following an absence seizure. For the first few weeks I was on it, I had seizures on average once a fortnight, most of them absence seizures but a couple where I lost consciousness (sorry, I don't actually know what they're called).
However since a couple of weeks before Christmas I haven't had any, so I'm hopeful it was just a case of the tablets taking a bit of time to start working.
Maybe they've made me a bit tired and a bit flat, it's hard to say. However I did find my seizures were linked to being tired as they were usually in the evenings and towards the end of the week so I'm trying to get more sleep and rest if I need to.

@Papergirl1968 that sounds really hard. Yes, it can be really tricky to know what is attributable to medication, or to the seizures themselves (or just normal reactions to shit situations).

Does anyone know how easy it is to get your driving licence back once seizures have stopped? I think you have to be seizure free for at least 12 months, don't you?