Any experience 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!)

I’ve been on it for around 15 years and it’s the only seizure med that has worked for me. I am rather sensitive to it though — when I first went on it, we did the usual of starting very low and increasing, and I very quickly had many different effects: the rage, suicidal ideation, and horrendous kidney pain. I also lost my appetite entirely for about three or so months, and I couldn’t stay awake. My life ending up being work, which I just managed to hold down, and sleep. That was it. I couldn’t continue like that so we dropped the dose again. I’m now pretty low per day. I haven’t had a tonic clonic since starting it, though I do still sometimes have absence seizures. My nurse and I agreed a plan where if I’m super stressed and tired (the combination is my biggest trigger) then I take an additional dose. The half life in Keppra is small, but it also takes affect really quickly too. So far this has worked well for me.

So in short, I had loads of side effects, but ultimately it was worth it for me. It does what it’s meant to and I have a life again.

I had loads of side effects upon starting such as getting really angry at the drop of a hat etc, these wore off within the first 2 months and I have now been seizure free for 4 years and am finally starting learning to drive.

I’m glad I stuck through the side effects and it is working for me but am well aware this is only my experience and doesn’t work for everyone.

Keppra has definitely improved my quality of life.

I haven’t had any Tonics, myoclonic or absence since starting - I am currently on quite a low dose 750mg morning and night.

Thank you for replies - it was what I was expecting really! They are adding it in in addition to my lamotrigine so hopefully the titrating very slowly will be OK. I wonder if AIBU to start it after Christmas - I have all my DC here for the holidays (some live at uni now) which is lovely and I want to enjoy it!

On it for around 10 years; started on 750 twice daily but side effects didn't go away (extreme depression, mainly) so dropped me down to 500 and felt right as rain. Good luck, OP

(Should clarify I'm still on it, no plans to change meds)

DH is on it. It is the only thing that keeps his seizures under control. He was having them regularly and ending up on a ventilator.

It has had some side effects on him. It has shortened his temper which isn't ideal. But we are both aware of it and watch out for it. But the bottom line is I'd rather have a sometimes grumpy seizure free DH than risk losing him through an uncontrolled seizure.

Good luck with it all

I was on lamotrigine for a while and began having seizures again, I was switched to keppra and was seizure free on a low dose (250mg twice daily) for 10 years or so. I suffered a little with fatigue but other than that had no symptoms. The fatigue got better over time too. However, I was on a low dose so that probably helped.

My 28 yr old dd has SLD plus she also suffers from cluster seizures which occur every 2-3 months and last around 3 days. (Tonic clonic)

She was on Lamotrigine for 5 years as a child and suffered tremendously. The seizures were horrendous and her temperament was uncontrollable. Eventually we found a new consultant who was happy to listen to us and she was switched to Keppra which she took pretty successfully for 9 years - for a couple of those years her seizure clusters occurred only twice per year - but then the “Keppra rage” took over and she became very violent.

She now takes Brivaracetam which is a drug related to Keppra but with less side effects. This, for her, is combined with Zonisamide. The seizures aren't quite as well controlled but her temperament is MUCH better.

If you are concerned about Keppra it may be worth asking your neurologist about Brivaracetam. I do wish you luck as it is so tricky getting the balance right isn’t it?

Thanks everyone for taking the time to reply, I really appreciate it!

I guess it comes down to the risk v benefit thing, I've had a couple of injuries from recent seizures so do need to reduce the risk. I do think though that I'll leave it until after Christmas especially as there are more people in the house so I'm not alone as much.

I've also had a very stressful and sad year (which I still think was the initial trigger as my sleep was badly affected too) but it's over now. I hope a new year and a new start will be good for my mental health, which hopefully may mitigate some of the side effects like depression.

It's a worry for my DH too @user1477249785 which I feel bad about. He worries as his shift patterns mean he isn't at home at the most "common" seizure time. A couple of times recently he has had to leave work as I've been very confused and rung him (I usually wouldn't say anything until he is home as I don't want him to worry at work).

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.

Hi OP, I just wanted to say that my son has been on keppra + now added lacosomide for a few years now. He definitely suffered with feeling groggy and fatigued when he started (on much lower dose, he's now on 4000 mg a day), but I would say that has gone pretty much completely. He is working now which he couldn't really before and although having meds reviewed as still having partial seizures he hasn't had a tonic clonic for two years and before that they tended to be was in extreme circumstances. Before Keppra he was on lamotragine and that didnt really control the seizures. Please don't worry about calling your epilepsy nurse, it's wonderful that you have one as many areas don't now and they will want to support you. I'm interested in your deja vu - my son has this and has always called it his 'warnings' as usually meant a seizure is coming, I hadn't thought it could be the medication? I hope the fatigue clears and that the nurse can advise.

@TheOGWanKenobi hiya OP - sorry to hear you are struggling with side effects.

I would honestly say stick with it for a bit longer - it took me 2 months for the side effects to wear off completely (I think I commented earlier) - I saw a reduction in them after a month - fully gone by 2 month mark.

What dose are you on? Could this potentially be reduced if the tiredness does not subside after a month?

I would say contact your epilepsy nurses to make them aware of the side effects - they may wish to monitor them. I know you say they’re overworked but it is their job and they need to be aware.

Wishing you all the best and hope that the side effects piss off for you soon

And also please don’t feel that you are alone - I felt very similar to you and felt I unsure I could cope with the side effects for the first month (I got the so called ‘keppra rage’) but am so glad I stuck it through - my mum convinced me stick with them, I saw a reduction in side effects after a month as I said above fully gone by 2 month mark.

@TheOGWanKenobi hi OP, just saw your post. Sorry you're having such a rubbish time on Keppra, what dose is your neurologist wanting you to get to? I would say in my experience be careful, I was on a massive dose last year & it really messed with me mentally. My dose kept getting increased because I started having focal seizures (tonic clonic seizures initially) and it wasn't helping (at all!) eventually I got put on lamotrigine too which made a huge difference. I would say stick with the Keppra if it's working, do you take any vitamins alongside it? I found a good multivitamin to help with the fatigue side of things. It's hard because it varies massively person to person. It takes a while for your body to adjust to Keppra I think

Oh thank you for replies, I feel better already for reading them! @BubblesThaDragoon I'm only on a small starting dose, 250mg doubling each week so it's early days, I will keep on with it as your post are reassuring!

@missjessie the epilepsy nurses here are wonderful - my epilepsy was adult onset, so after my first two seizures I was an inpatient and transferred to a hospital which isn't my most local but it is a centre of neuro excellence (?) so I think this is why the care is so good. The deja vu is worse before a seizure but I still have it in between, the consultant said it is most likely interictal activity but possibly a meds side effect. It's disconcerting but I'm used to it, the jamais vu (which I had never heard of prior to all this!) is more disturbing. I have it strongly after a seizure where I wake up and don't know who I am let alone where I am, but also intermittently at a lower level - eg I am in my bedroom and earlier I couldn't visualise what was outside my bedroom door. Or I walk into the kitchen and have no idea how to work the washing machine as I don't recognise it. Brains are very weird aren't they?! The consultant said it's similar to when you see a word so many times you don't "recognise" it as a word, or when you look in the mirror too long and your face isn't familiar any more.

@lionsmum a multi vitamin is a very good idea thank you! Especially as my diet is shit and I'm living on ice lollies atm  I have B12 prescribed but I'll add a general one. Never thought to do this so thank you.

Add fish oils too!

It will get better (I’m one of the posters above with a name change) but you need to try and ride it out. You may find that if it’s still bad after a few months you can drop the dose again and some of the side effects may vanish.

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

I tried keppra years ago but didn’t like it. It made me feel like I had pins and needles all the time. I’m on lamotragine, topirimate, brivicat and Perampenol now. Works ok but still have seizures. My VNS helps.

Forgive my ignorance @BigYellowHat, what is VNS?

(It might be something I know but have forgotten, my brain is fried this week. Post seizure I was worried one of my DCs would be late for school and that her reception teacher would tell her off. This DD is actually at university My brain served up the name of this teacher and everything, but if you asked me "normally" so many years later I wouldn't had have a clue what her reception teacher was called!Brains are so odd. I've spent the last two days not completely sure what day it is and have to keep checking.