Epilepsy and changing meds

[Halfcupfull]

Hi, I have reposted, but in AIBU for traffic.

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

I wish I could help. My son has just been weaned off Keppra but is still on Lamotrigine (Lamictal) and Epilim.

He started off on Lamotrigine and after still having seizures, the consultant added in Keppra. The seizures still carried on so a third (Epilim) was added.
About six months ago Keppra was gradually reduced and he's now on just two drugs.

No seizure a for 15 months now 🤞🏻🤞🏻

My child has epilepsy, whilst we don't have direct experience of that particular med, they were on levetiracetam which I believe is similar.

My child didn't have any of the side effects that many people do have.

They've just weaned from this med as it didn't give full control, but as a parent watching your child having multiple focal seizures per day and tonic clonics a few times per month I'd try anything to gain some seizure control. People react differently to the meds.

My child now just takes oxcarbazepine and has been seizure free for 14 months

Thank you for your replies @SAH07 and @bestofall

I cannot even begin to imagine, the distress caused by your children suffering from epilepsy. 💐 You both sound like amazing Mums.

@SAH07 was it lamotrigine they weaned your son off of? I've been reading up on oxcarbazepine, and the side effects look alot better than the ones with brivaracetam. I was assuming that the consultant maybe didn't change me to that because it is similar to Lamotrigine, or in the same family, and that hasn't gotten them fully under control.

Does anybody know if you already suffer from anxiety, would a side effect of anxiety be more likely to occur/make current MH worse? My anxiety is manageable and hasn't required medication, but I'd hate to help one thing and end up worsening another.

Brivaracetam seems to be similar to Keppra, but alittle better tolerated, from what I can gather. The common side effects are anxiety and irritability, which I am very worried about.

@Halfcupfull my son has never taken lamotrigine.

He has been on 5 difference meds and only oxcarbazepine has given full control.

To be honest after the initial few weeks he's never had any negative effects from any of the meds, just the negative side effects from the seizures.

I have heard that Bivaracetam is a bit kinder than levetiracetam.

Do you use Facebook? There are some great epilespy groups on there

Did you know that before the drugs were invented epilepsy was treated through diet?
It might be worth looking into if you are not tolerating the meds well.

Yes, it is similar to Atkins, and this isn't a diet I'd advocate tbh. Some studies suggest that keto provides insufficient vitamins and minerals, including potassium and magnesium. Over time, this could lead to nutrient deficiencies. And there is risk of dangerously low blood pressure, impaired bone loss etc. It isn't for me. I have a varied healthy diet, which I will continue.

Thank you for your reply. There are so many drugs, I'm sure there is one I will tolerate. I have tolerated Lamotrigine side effect free, it is the only one that has been tried, and this has has helped me; it jushasn't t gotten them under control fully. I know there are many medications, so I was just interested in any experiences on Brivaracetam.