seizure control-briverictam & lamotrigine

🫤 I can’t remember what the epilepsy nurse I spoke with last week said when we spoke about this.

I’d asked her how long it should take for the increased dose of briverictam to kick in. (It was increased 2/3 weeks ago, now).

I *think* she said it takes approx 4 weeks (it’s in addition to the 200mg lamotrigine 2x daily since Nov/dec 2023). The latest dose of briverictam I’m on is 50mg 2x daily. I know I’ve been assured by the neurologist, and the epilepsy nurse that there is more wriggle room with dosage.

Of course the reduction in frequency is good. The fear of having seizure clusters never leaves. It’s only been by chance when that has happened, it’s been while with other people around (in a letter from a person who was the last to call an ambulance in November 2023 she reported 6 tonic clonics in 2 hours and 10 absence type seizure’s..that is how the seizures continued in the days after while in hospital ) . Clusters of Tonic seizures (like that one and previous clusters when there were higher numbers in shorter times when ambulances were called by the people with me .) it equates to post ictal psychosis in my case. I’m not sure I’d know I’d had a cluster since I don’t always know I’ve had a tonic clonic .

Looking here and having spoken with some other people who know their stuff re epilepsy, this reduction in seizure frequency is closer to untreated epilepsy for many people with adult onset epilepsy. Have been told repeatedly not to compare but it’s hard not to , sometimes.

Stef

[EpilepsyAction1 Partner Epilepsy Action]

Hi Stef

It’s great to hear that you have had a reduction in your seizures. But it's understandable that your feeling worried right now. I wonder if you would find it helpful to speak to a member of our team about your experiences and concerns. You can call us on 0808 800 5050.

[Hidden in reply to EpilepsyAction1]

Thank you very much for the reply

It really feels like I’ve hit my latest wall in terms of trying to find the right balance of trying hard to function a bit , in a normal sense . And coping with sheer exhaustion, and an odd feeling of dread / anxiety /confusion (a very new combination of emotional states for me) that’s gotten much worse recently. It’s not lifting-the opposite.

I spoke with a pharmacy assistant at my GP practice earlier & she’s arranged for the pharmacist to call tomorrow & advise on recent medication/dosage changes. There’s uncertainty as to whether it’s related to the medication changes or a really 💩 coincidence.

I’ll see how that goes tomorrow & will try to call epilepsy action too , thank you.

Stef

[Mybraveface in reply to Hidden]

Hi Stef, Sorry to hear how tough you are finding things, but try to stay strong! Since an operation on my temporal lobe to remove epidermoid cysts in 1989, I've had epilepsy - nocturnal seizures and daytime absences. For many (20+) years they were controlled by a combination of carbamazepine and clobazam, though over recent months due to increasing side-effects from the carbamazepine I have switched to Briviact with the clobazam. Initially they started me on 100mg bd Briviact, but I was exhausted, feeling well 'spaced out', confused and anxious - pretty much as you described and just not my usual self. A few weeks ago (after A&E trip) my Briviact was reduced to 75mg bd, and the difference is amazing, I feel and can think like the 'usual' me again! Briviact seems to be a new drug which they just don't have enough experience of to know the best dosage levels [whereas they knew the ideal range for carbamazepine which I was on for over 30 years] !

Keep positive, as it's possible you might find that right dose to suit you.

We all react differently to these AED meds, which is why there are over 200 drugs!

But once you can find your ideal levels, you may well find you can get back as near as possible to a 'normal' life again. Keep up the fight, and you just never know, but you may well get there!

Best of luck my friend 🧡