Brivaracetam epilepsy

[Halfcupfull]

Hi, I am currently taking 400mg Lamotrigine per day (200 twice a day), for complex focal onset seizures. I have been on Lamotrigine for two years, but my consultant says it isn't doing what is supposed to do. I am still getting frequent seizures in my sleep and waking, and occasionally through the day. He is changing me gradually over to Brivaracetam, 100mg twice a day.

Does anybody have any experience on this medication? After reading the side effects on mood disturbance, I am increasingly apprehensive. I would hate to start this new drug and up even worse than I am now. I have young children and need to be fully there for them.

Any experiences of this drug would be greatly appreciated.

BUMP

Hello Halfcupfull

I've been on Brivaracetam for 7 years now with 100mg of Lamotrigine as an adjunct.

Overwhelmingly the daily side effects of it are minimal to none compared to the myriad of other AEDs I've been on over the last 30 odd years. The biggest positive is that I've not had an epileptic seizure since I started it; prior to this I'd never been seizure free for more than about 6 months. However, I do now have non-epileptic seizures (not related to the Brivaracetam) which are another level of nightmare!

As you'll know, the side effects really vary from person to person, so your experience may well be different to mine, but be aware that the period from starting it to reaching the final dosage was really awful (for me), the side effects were horrific for quite a few months. I'm so glad that I perservered, being seizure free (well, epileptic seizure free!) was very worth the hideous months of new drug 'illness' for me.

I have mental illnesses, so the warnings about the possible worsening of symptoms here was a worry, but my mental state didn't noticeably deteriorate. Clearly, it's entirely possible that my mental illnesses could be improved without them, but the only way to know this is to stop taking them which I don't want to do - I really don't need to have to contend with both epileptic and non-epileptic seizures!

My children were 4 and 6 when I started, so I understand your concerns. I'm not certain that I could have got through those months without the full support of my husband and friends doing occasional school runs and so on. I should add that with every AED I've suffered extreme side effects, so perhaps I'm not typical.

I hope this helps a little.

Wishing you the best.

Hi @ProfessorRapson thank you for replying. I am pleased you are Epileptic seizure free, but I'm so sorry you are now experiencing non epileptic seizure. What a nightmare! Nothing is simple is it?! I am worried that if Brivaracetam does miraculously make me seizure free, will I just end up with a host of MH issues instead. I already suffer from anxiety to begin with. The consultant wants to get me off Lamotrigine completely, and have me fully on Brivaracetam over the course of 3 months.

I also have 2 young dcs, who are 4, and 7, a similar situation to when you began to change. My husband has a flexible job, and works from home 60% of the time. He will be starting a new job at the same , is far from ideal. Dh will still have the same terms though, fortunately.

I have three school runs a day, so my husband does most mornings when I'm tired, and I do the other two. My seizures are mainly nocturnal, so my sleep isn't great most of the time. I do get dc1 ready, breakfasts etc and up to the point that dh only has to take him to school, while I stay with the little one. I just hope during the change that I'll have the energy to still do this at least. The dynamics may be a struggle otherwise.

I hope I have the strength to persevere through any nasty short term side effects. I have heard anxiety is a long term one, so this terrifies me. I lost my Dad recently, and really don't need anything messing with my mood. On the other hand though I cannot go on how I am atm.

Can I please ask how long it took for the side effects to subside for you? I'll be coming off 400mg Lamotrigine (200mg twice a day), and titrating to 200mg Brivaracetam (100mg twice a day) over 3 months.

And I just logged on today, and realised there was a message. I have struggled to find anybody on Brivaracetam, but have heard it is alot better than Keppra. I will solely be on it so I am hoping my mood will be okay, as I know Lamptrigine is a mood stabiliser too. It won't be there to counteract anything, and I have heard anxiety is a common long term side effect.

I'm on a complication of carbamazepine (tegratol) and topiramate (topamax).

I tried lamotrigine, and Keppra (which was absolutely hellish) but topiramate was the only one that worked, alongside carbamazepine which is my 'constant'.

I would say it's highly inadvisable as a combination if you're considering pregnancy, I found that out the hard way, but it works well to control my seizures.

Brains are irritating things!

I have generalised anxiety disorder and so understand your concern, Brivaracetam definitely hasn't made this worse for me and I didn't notice any particular worsening of my MH either. I'm so sorry about your dad, my mum died about a year before I started taking Brivaracetam and the thought of adding something that could potentially destabilise your mood further is a legitimate worry.

My side effects experience was complicated as I was reducing antidepressants at the same time as starting Brivaracetam - I cannot recommend this! So, it's difficult to know which side effects were solely the AED. The whole side effects period lasted no more than 4 months (I think it was less than this but I can't quite remember). I mostly recall being very sensitive to noise, feeling like I was going to fall over, lots of dizziness, just generally spaced out and I had to nap quite a bit during the day. My DH did lots of the school runs and if I had to I'd get a school runner friend to walk with me, just in case. As I said, though, do remember that my experience included antidepressant withdrawal and it might not be so intense for you. Once I was on the final dose, the side effects dissipated quite quickly, I think.

I'm a plan for the worst type of person, are you able to put loose plans in place to help you to cope if necessary?

Please don't be terrified, think of the end game, it was so worth it for me. Have you ever been on Keppra? This was the worst for me and I had to abandon it after 2 months because the side effects were too severe, Brivaracetam was not nearly as horrendous as Keppra!

Can I ask why they've taking you off lamotrigine? I'm still taking lamotrigine as well, 100mg. Various clinicians always mention that it's mood stabilising, I've never noticed it, even when I've been on a higher dose!

I hope what I've written doesn't put you off, once you can get through the initial period of crappiness, it's so worth it.