AIBU to ask a question here about Keppra/epilepsy?

[TheOGWanKenobi]

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)

This thread has been really useful. I couldn't understand my increased anxiety but now I'm thinking its because of the medication.

@KurriKawari I'm glad it's been useful to you too. I've found it very helpful.

Although I have been thinking how ironic it is that I used to like taking mind altering drugs and now it's shit

Thanks OP - yes it’s been awful. I was devastated when it happened after so long and the impact it’s had on my life, my job and my children has been huge. I just feel so empty.

I’m feeling very nervous about seeing the Neurologist on Friday because I just don’t know what to expect.

Having epilepsy is totally shit.

In contrast to PP, lamotrigine gave me the rage & Keppra has been a godsend with no mood swings at all.

Unfortunately I think it's the type of medication that a trial by the individual user is needed to discover if it works for you.

Hope you get it sorted.

raises hand

I was on Lamotrigine and it didn't do anything for me whatsoever. I was weaned off that first and went on Keppra. This was about 15 or so years ago, so it was pretty new over here.

My Dr increased my dose to make it quite high over a number of weeks, and I had all sorts of side effects. The biggest ones were complete absence of hunger (great at first, but I ended up eating a tiny amount of food every day for about four months in the end), horrific kidney pain (I was using hot water bottles and popping pain pills daily), and horrendous issues with sleep (I would sleep 90% of my spare time. I was holding down a full time job still do and I was sleeping until 30 mins before work, then sleeping from as soon as I got home until it was time to get up again, apart from a short space to eat. I literally wasn't doing anything else).

I also had Keppra rage pretty bad but I didn't recognise it in myself. My mum did, and pointed it out, and said we couldn't continue like that.

Anyway, the kicker is that Keppra is amazing at seizure control for me. So the Dr was keen to experiment with the dose. We started reducing the amount I was taking and got it down really low (500mg per day), which was the highest I could tolerate the side-effects with, but still maintain seizure control.

At about six months in my hunger returned (woe!) and the kidney pain stopped. The rage also mostly vanished (though I do think I am more short tempered than before Keppra). Sleep can still be an issue -- the problem with Keppra is that it makes you sleepy but it can ALSO give you insomnia. So I tend to get really bone-tired after work but then really struggle to sleep after 11pm. This is regardless of how much or how little sleep I may have had.

So I mostly manage the remaining side-effects by having a time-controlled nap in the evening when I am able, and that allows for me to be okay with the insomnia until it lets me crash again around 3am.

Exercise helps. B-vits help. Water helps.

I do sometimes still have absence seizures if I am very stressed, but they haven't turned into tonic clonic/grand mal seizures since I have been on Keppra. I was also told that because Keppra has a really short half-life, it's perfectly okay to take top-up/emergency doses should I feel I am at risk (in certain situations when I have had very little sleep and I may be very stressed). So I just take half a pill (250mg) top-up in the evening when that happens and it tends to sort me out.

Honestly, for me the side-effects were worth it. They were hell, but they did (mostly) go away. No other med has controlled my seizures before Keppra. I am quite sensitive to it, hence the low dose for tolerance, but I think more doctors are aware of this possibility now. My advice would be to try it but to go into it with eyes wide open, have someone you trust who can tell you about the side-effects you may be oblivious to, and be willing to ride it out for a while.

Happy to answer any questions!

I was put on Keppra when it first came out over here - I think about 15 years ago. I'm on a pretty high dose (1500mg bd) plus a couple of others, but it's a combination that seems to work. I was on lamotrogine as well but it just didn't do anything for me.

I haven't had side effects from the Keppra, but then as I've never been on Keppra just on its own I suppose I wouldn't really know which one it was. My ever so well-educated neurologist once told me that I must have the constitution of an ox to not get any side effects from meds: I was on five different ones at the time 🐂🤷‍♀️

What kind of B vits do people recommend? I take a general multi vit, but it's doing absolutely nothing for my faitgue levels.

I was taking 2000 mg keppra twice daily but I didn't have seizure control. I had tonic clonic & absence seizures caused by photosensitive epilepsy while on that dose.
The main side effect was tiredness.

I've now started zopiclone & I'm reducing the keppra slowly. I'm aiming to cut down to 1000mg a day soon.
The zopiclone seems more effective for the epilepsy although there are other side effects.

My MH is all over the place but then I have schizoaffective disorder which I take anti psychotics & anti depressants for.
It's sometimes hard to know what caused by which health problem.

@Aveisenim - I take a multi-B as they tend to have higher amounts than a multi-v. I also take iron and magnesium supplements, and EPA fish oils.

Has brivaracetam (Briviact) been offered to you, WeBuilt? Where I am, where appropriate, they're moving people from Keppra to Briviact. I really struggled with the side effects when I was on Keppra (about 15 years ago) and had to stop taking it after a few months. I found the side effects from Briviact quite difficult to cope with until I was established on the final dose, but I don't have any discernible effects now. I do still have to take Lamotrigine as they won't currently prescribe Briviact as a monotherapy. It might be worth exploring, it's the best AED I've ever had (about 7 or 8 different drugs over the past 25 years). Good luck

@QueenofmyPrinces how did you get on at the neurologist? Hope all Ok.

@LilyJade is the zoplicone used for seizure management? I have a recollection of having it prescribed for me for insomnia quite a long time ago, and it worked very well actually. That's interesting.

@Aveisenim re B12 I take 1000 micro grams daily (prescribed by GP)

@ProfessorRapson no, I've never actually heard of Briviact! My consultant said that if we were to change/add the next recommended one would definitely be the Keppra.

He's basically said what lots of you are saying - that the seizure control is most important thing, more so than side effects unless the side effects are very severe indeed. Still seizure free though so tempted to stick with status quo for now.

PS @FoldyRoll thank you, I love my name This is a little odd but slightly relevant, after a seizure (when properly awake not post ictal) I feel really "creative" and (ironically can't think of the word now ) write down lots of stuff - this username came to me in one of those periods. It's quite odd really. DH and I sometimes write limericks/haikus to each other (definitely not in a wordy pretentious way more funny and jokey, the last one ended in "off you fuck then" ) and some have arrived in my head after seizures, completely ready and just "there".

It's especially odd as my working memory/word recall these days is very poor, so it's almost as though the seizure "puts everything back together" and speeds it up, then it goes again.

God, brains are weird.

how did you get on at the neurologist? Hope all Ok.

The hospital phoned me yesterday evening and cancelled my appointment due to sickness. I nearly cried. I’ve waited over 4 months for this appointment (the referral was put in at the start of August) and now I’ve got no idea when I will be seen. I’m really upset about it.

Hi @WeBuiltCisCityOnSexistRoles it's actually Zonisamide not Zopiclone.

I'm finding the Zonisamide quite effective for my photosensitive Epilepsy & im only on a small dose so far... whereas I took a lot of keppra & had several bad tonic clonic seizures plus absences on it.
I'm going to build up the dose of Zonisamide slowly as I reduce the keppra.
I hope it's successful as I want to see Stormzy with my cousin next year & there's strobe lights!!

Oh @QueenofmyPrinces how frustrating for you Was it your consultant you were due to see? It might be worth ringing their secretary and seeing if they can squeeze you in ASAP/a cancellation slot? So disappointing when you need to be seen and waited so long.

My consultant/hospital is a long way from me (two buses and a train as I'm not allowed to drive atm!) as I was transferred there as an inpatient as it was a "centre of excellence" (?wording) and they kept me under them. It's such an awful faff to get there for appointments but reading other peoples' experiences I don't think I would change to a more local one. They have a team of specialist epilepsy nurses who are always available on a helpline so you can always get advice. I genuinely can't fault the care at all.

That's not meant to be insensitive or make you feel worse, sorry I just realised it might be read like that just to demonstrate that it is possible and I really really wish all hospitals could be like this. It is so important to patients.

how frustrating for you thanks Was it your consultant you were due to see? It might be worth ringing their secretary and seeing if they can squeeze you in ASAP/a cancellation slot? So disappointing when you need to be seen and waited so long.

Prior to my recent seizure I hadn’t seen a Consultant for over 10 years so this is a completely new referral so I have no idea who I was supposed to see.

Apparently the hospital have to see you within 18 weeks of receiving the referral and I’m almost at the 17 week mark.

I work at the hospital my appointment was at so I’m going to go up to the department in my break tomorrow and start getting pushy. Maybe if they see me in my nurses uniform they won’t be quick to fob me off!

How did you get on @QueenofmyPrinces? I hope it is all going OK

I was on lamotragine coupled with ethosuximide for years, from five till 15 I think. Ethosuximide was being withdrawn so I was gradually taken off it. I had read about Keppra which was a new drug at the time and asked my consultant if I could try it. I was on keppra and lamotragine for a further seven years and honestly it was the best drug I've been on to help control my seizures. I wa son 500mg of keppra, and 150mg of lamotragine. My seizure threshold went way down. There wasnt many side effects that I could remember, mood swings only when I was adjusting them. I had to be taken off them briefly when I had a hospital stay at 21 as they are one of the few AED that goes through your kidneys, though I went back on it and as before my seizures went way down. I was taken off it when I was 22/23 as my EEG proved much lower levels of epileptic activity, and as such didn't need it anymore. Currently on 150mg of lamotragine and likely to be on it for the rest of my life. But it worked for me, so try it and if it doesnt work speak to your sapphire nurse or consultant and look at stopping it/change the dose. Good luck xx

How did you get on @QueenofmyPrinces? I hope it is all going OK

It went brilliantly!!

She thinks the seizure was due to me being on a different version of the medication for the 10 days preceding it and that theres no reason to think my epilepsy control has been lost now that I’m back on my normal version.

She was happy for me to reapply for my licence and for me to drive again in February which will be 6 months after the seizure happened.

She doesn’t want to increase my dose or add in another medication because she thinks that now I’m back on my normal version of the tablets there’s no reason to think I will have another seizure.

I have got to have a blood test to check my lamotrigine levels but I think that’s more procedure than actually because she thinks they may be low.

So yes, it was a very good appointment and I’m feeling so much happier!!

Good to read @QueenofmyPrinces. I’m on both lamotrigine (150mg twice a day) and keppra (1000mg twice a day). Been very lucky no side effects. Didn’t know about the Vit B so I’m going to look into it.

I had a horrible horrible time with keppra. Came off of lamotrigine onto it at 18 and it was awful. Hallucinations, panic attacks, the works.

I was working as a waitress at the time, and remember (well, I don't, but have been told) that I served a table drinks, took an order... there wasn't anyone sat at the table. Boss called my mum and that was the breaking point.

Rang my consultant in tears threatening just to stop taking it altogether, was too desperate even to wean off of it (I did wean off, on to my current mix)

Only have a few fits a year, but in that sorry episode I was having huge amounts, full blown seizures and the 'spaced out' ones, which I find scarier - I find it such a hard thing to explain, being aware of your body but unable to stop what you're doing?

Have now been on carbamazepine and topiramate mix for over ten years and been fit free (touch wood) for five years. Only one nocturnal breakthrough and that was under extreme stress.

I know it is a wonder drug for some, and if you're well supported and have a good specialist it's worth a try, but please do take the side effect warnings seriously. In my experience, it really can be quite scary

@QueenofmyPrinces that's such good news (well good under the circumstances!) I'm very pleased for you, especially about the driving!

And thank you everyone else who has replied too, I don't want to jinx anything but atm nothing has changed here so there has been no more discussion of changing meds. I'm being very careful to get enough sleep etc and try not to stress (although this bit clearly isn't working as I just lost my shit on another MN thread

Waves back at webuiltthiscity you mean you lost your shit eloquently