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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

AIBU to ask a question here about Keppra/epilepsy?

47 replies

TheOGWanKenobi · 26/11/2019 16:29

I know it's not an AIBU, but this is busier than health, which is where I posted first but I don't think many people will see it.

I just wondered if anyone had any experience of levetiracetam/keppra especially changing from/adding in to lamotrigine?

I have tonic clonic seizures which aren't currently controlled, I am on 450mg of lamotrigine (it's been upped gradually to this point). I've tolerated it pretty well except the insomnia and wanting to eat everything in sight! It was last upped a couple of weeks ago after my last seizure and I've not had any since.

My consultant has given me the choice to (I can't remember if it was swapping totally or adding it - the epilepsy has affected my memory) keppra but has warned me there is a significant risk of mood swings. Atm I have decided to see if I have another seizure before going on to it, but weighing it up.

I really don't want to risk another seizure as I broke a bone in the last one but the 450mg may control it without adding anything. Difficult decision.

If anyone has any experience I would be really interested and grateful, I've searched previous threads but a lot were about DC not adults.

(The medication change won't make a difference to the memory problems, it's not related to the medication)

OP posts:
MontStMichel · 26/11/2019 16:50

DD was put on Keppra, on top of lamotrigine and clobazam.

IMO, mood swings is a polite way of putting it. Keppra rage is another name for it. We’d ask DD an innocent question like what would she like for dinner, and she jump down our throats! It was like living with the Devil!

In her case, it did nothing for seizure control; but I have heard it can transform people’s lives - it really works for some people, where other drugs haven’t!

charm8ed · 26/11/2019 16:54

My DS has Lamotrogine and Epilim Chrono controlled release and the combo has been working really well for him.

QueenofmyPrinces · 26/11/2019 16:59

Following with interest...

I take 450mg of Lamotrigine and 4 months ago, after 13 years of being seizure free, I had a tonic clonic seizure at work Sad

I haven’t seen a neurologist in over a decade so was re-referred and I have my first appointment with him this coming Friday. I’m petrified that he’s going to try and make me swap my medication.

OneShotFinch · 26/11/2019 17:08

Lamotragine made my seizures worse, so I was taken off of it and put on Keppra. At first, I definitely noticed the so called "Keppra Rage" - I would get horrible mood swings around 1-2 hours after taking it, but to be honest it soon settled down. I've been on it for 13 years now (seizure free!) and I don't think it causes me any side effects anymore. (I can still be a moody cow sometimes, but that's just me! Lol!)

I think everyone reacts differently, but for me, its been brilliant!

I hope you find what works for you soon. Best of luck xxx

Snoopdogsbitch · 26/11/2019 17:13

DS is severely epileptic and we've been on so many meds it's hard to keep track. Keppra was horrendous for him- the rage was unbelievable- and had to come off pretty quickly. Good luck, it's so different for everyone.

ClaraThePigeon · 26/11/2019 17:14

Adding the Keppra was exactly what was needed to control my Mother's seizures. Once she started on Keppra there were no more seizures and no mood swings. She's been nine years seizure free.

Everyone is different of course but I'd try it.

ClaraThePigeon · 26/11/2019 17:15

Adding Keppra to Lamotrigine that should say.

Bakingqueen23 · 26/11/2019 17:33

Might be a question for Women with Epilepsy on Facebook, very supportive, please join. Lots of conversation on this very issue Personally keppra quickly got my seizures under control but made me very anxious. But that's my experience, and everyone is different - good luck

Squashpocket · 26/11/2019 17:58

My DH used to have 1 or 2 tonic clinic seizures per week, with a subsequent day off school/work each time. It had a massive impact on his education/work/happiness.

About 8 years ago his consultant started him on Keppra (I want to say 1000mg but not sure!) and he hasn't had a single seizure since the first tablet. Not one. It's completely transformed his life. No Keppra rage either, he's a delight Grin

TheSquitz · 26/11/2019 18:04

My mum had suicidal thoughts on Keppra then was put onto Lamotrigine which worked wonders.

Original poster
TheOGWanKenobi · 26/11/2019 19:36

Thanks for all replies (AIBU is definitely much busier than Health!) I went to get some food and forgot i had posted here Blush

It seems the jury is divided, I'm grateful for all the feedback, thank you. Is the Keppra Rage is a bit like Roid Rage? (I've had steroids for another condition and not experienced the rage I was warned about but obviously they are different drugs).

I'm not on Facebook (and I'm banned from Twitter Grin) so didn't even think of looking at social media or the forums Blush MN is always my default go to for advice! I shall look, that's a good idea thank you.

I know whatever I do will be the wrong thing, if I stick with the status quo I'm risking another seizure, if I change I might have another seizure anyway and the side effects. Sigh. The worst problem actually isn't the seizures themselves so much, as that isn't a daily thing, it's the uncertainly and fear of them, and the memory loss is the worst aspect of it all but the medication won't change that.

I'm seeing the consultant again in three months so I'll research a bit more and weigh it up.

PS @QueenofmyPrinces I'm sorry to hear that, did you post on MN at the time? I think I was on a very similar thread. It must be awful to have a recurrence after so long seizure free.

OP posts:
Aveisenim · 26/11/2019 22:20

Keppra is a bitch but the only one I've found so far that works for me in the slightest, I don't have grand mals but do have petit mals and myoclonic seizures. However it has made my memory and sleeping issues worse, as well as exacerbating anxiety issues I have and depression. It can be tricky finding the balance. I've been on it for years now and I'm still not fully seizure free.

underneaththeash · 26/11/2019 22:33

Not personal experience, but if you're still having seizures you need to try something else.

I'd explain to your family and friends beforehand that you may have a few moods swings. One of my best friends is on a different drug that also potentially causes mood swings and she does get them (but she's warned me and I want her to be well, so that's fine).

LegallyBrunet · 26/11/2019 22:55

I’m on a really high dose of Keppra- 1750mg- along with another drug. It doesn’t affect my mood although it does make me really sleepy. Its worked wonders for me; three years seizure free

Muckycat · 26/11/2019 23:32

I've been on Keppra, added to Carbamazepine since Jan and whilst it has controlled the seizures extremely well, the side effects have been grim. No keppra rage (which I was expecting) but anxiety, suicidal thoughts, depression, panic attack after bloody panic attack, memory problems. The carbamazepine caused weight gain and fatigue which I have been able to manage a bit with keppra so it's not all bad but not an easy ride by any means. I found lamotrigine rather ineffective though so worth asking your consultant what else you can try.

KurriKawari · 26/11/2019 23:49

On keppra. Do find issues with my memory and anxiety. Feel really overwhelmed some days by stuff I hadn't before. But no mood swings or rages.

MedicineHat · 27/11/2019 01:32

I added Keppra to Lamotrigine about 14 years ago and eventually dropped the Lamotrigine as I didn't get on with it at all - it made me really really sleepy all the time.

Keppra was the best thing to happen to me at that time. I got my life back and I've never had any side effects that I've noticed. I've had 1 seizure in the last 14 years, when I tried to reduce my dose. I've increased the dose twice, during 2 pregnancies and then reduced after.

I'm not sure if it makes a difference the type of epilepsy you have for how well it works and what side effects you have, but I have Juvenile Myoclonic Epilepsy.

Gemma2019 · 27/11/2019 01:53

If you take Keppra then make sure you also take a good vitamin B supplement because it really depletes them, particularly B6, which causes all sorts of fatigue and mood swings.

My son is on keppra and lamotrigine but we are very much still at the trial and error stage, which seems to be lasting forever.

GlamGiraffe · 27/11/2019 02:00

Keppra didn't affect my mood, it just made me feel really intolerable peculiar, like I was on a continual rollercoaster. I couldnt take it. I sometimes have to raise my lamotrigine to very high levels (have you had a blood serum level done at all?) I now take in in conjunction with topiramate which is my best combination so far.
From personal experience my lamotrigine has been a much higher dose than yours so you might be able to increase it further and it still be effective. Im currently taking 600mg a day and it's been much more in the past.

FoldyRoll · 27/11/2019 02:16

I'm on 1500mg keppra for epilepsy caused by a brain tumour. It stopped the seizures right away and I don't get any mood swings.
Years ago I tried a low dose of tregatol(?) as a mood stabiliser and despite it being around a quarter of the dose required for epilepsy, it felt like taking an elephant tranquilliser. I could barely string a sentence together. Keppra is much better.

Yes my memory is appalling and I get madly over stimulated by lights, noises, busy places etc but no one is quite sure if that's down to the keppra or brain radiotherapy. The neurologist suggested it could be my version of kepprage but it controls the agonising seizures so well we've decided it's better the devil you know.

coffeeoclock · 27/11/2019 02:55

Hi, I'm on 500mg Keppra daily and have had grand mal, tonic clinic seizures since the age of 14 (now 20). I actually have a meds review tomorrow as my neurologist wants to change mine as I'm too tired constantly and can't remember anything or focus on things anymore. I've been seizure free for 2 years now but that will probably change soon if he lowers/changes my meds Sad

I can't work or go to university because of the fatigue and memory issues so it's a big deal for me if we manage to sort it out! I'm sleeping for over 18hrs a day most days atm.

Original poster
TheOGWanKenobi · 27/11/2019 07:55

Sorry for anyone that is struggling, it is very shit isn't it. I was always very ignorant about epilepsy before mine started, I just assumed people had seizures and then recovered but that was it, nothing about the side effects or the meds!

I'm leaning towards trying the Keppra, the drowsiness effect would probably be a benefit for me (sorry, not making light of other people struggling with this) as my insomnia is so bad atm. It does worry that the mood swings will be another thing for DH to worry about, he worries already as my seizures are so unpredictable and some have occurred whilst he was at work. He worries if I don't answer my phone!

I had a lot of tests when it developed as I had a hospital stay due to the severity of a seizure and injuries so I'll check about the serum. They're not sure why it developed but they are tonic clonic and it originated in the (left?) temporal lobe hence the memory issues. This really does get me down as I think I annoy my family asking the same questions repeatedly but they don't complain Blush

I think if the Keppra does work then it will be worth taking the risk, and I think it's worth taking the risk to find out. I shall update the thread if there are any interesting updates as you have all been so helpful and I appreciate you taking the time to reply Thanks

OP posts:
FoldyRoll · 27/11/2019 10:40

Good luck OP (love the user name). It's definitely worth a try. I don't think there are any epilepsy drugs without side effects and it's individual which ones you get, so I hope you're lucky with any you do get.

VegHead3000 · 27/11/2019 11:08

Had bad mood swings and anxiety first time on Keppra, but my neurologist halved my dose and it’s much better now. These things always take a while to bed in, I suppose (didn’t know it could make issues with lights and noise - can’t bear them these days, and didn’t know that could be Keppra-related).

scissy · 27/11/2019 11:27

Another one who had a bad reaction to Keppra (gave me hallucinations!)
I take a drug (I'm on drug number 5 Shock) not listed here but that's for absence seizures so probably not applicable. FWIW, I did reasonably well with lamotrigine even though it didn't work in the end.