Medication change

[Shancock]

Good morning Advice appreciated please

My son 20yrs old suffers focal seizures and tonic clonic sometimes partial absence too.

He has learning difficulties, complex needs an non verbal autism.

9 months had a VNS fitted, sadly has not helped.

He takes Carbamazepine 3 times daily and Brivaracetam twice daily. Still has 2 - 3 seizures a month.

Cons has started reducing the Briv by 1ml each day every week now he's on 6ml twice daily but last 7 days big uptick in seizures especially partials.

I want the Briv increased back up as this is terrible for him, leads to irritability and tiredness.

They want to try another med but I think would be best to get him settled first.

Any thoughts? Experience or opinions would be greatly appreciated.

Thank you

SW

[Shihtzu23]

hey I have a daughter 22 who suffers from seizures and also has autism and ADHD. She is under investigation atm on what maybe causing her seizures but it’s been such a long wait just to get an appointment which was finally given for February next year. She is on a medication called clonazepam which she takes every morning but it doesn’t seem to help that much. I really hope you get the help you need for you and your son as it’s a hard struggle to go through watching your loved ones hurt.

[Shancock in reply to Shihtzu23]

Oh dear I hope you get an appointment soon, keep chasing as you shouldn't be kept waiting with seizures.You should also get an epilepsy nurse for you to contact when necessary.

We have tried that medicine too and found it no help. I think it's good in large doses for stopping clusters.

Please keep pushing to get seen it shouldn't take this long x

[NicEllaDawn in reply to Shihtzu23]

Shihtzu23 Clonazepam is a relaxant /calmer that is often used for mental health conditions and its best affect is felt if taken twice a day with the second doze being at least 6 hours after the first! I know this as I was given it for that specific reason after being admitted to the mental health unit I currently live in! I normally take it at night to help me sleep!

[NicEllaDawn in reply to NicEllaDawn]

Has your daughter been diagnosed with epilepsy shihtzu23 or has she been experiencing the seizures since she started the clonazepam? I ask because I find that with about half an hour of taking clonazepam I have 1 -5 mild short sudden muscle jerk seizures known as myoclonic seizures in my legs!

[Mybraveface]

A craniotomy to remove temporal lobe epidermoid cysts in 1989 caused my epilepsy, so I was started on carbamazepine (Tegretol retard), and I took it for over 30 years as it controlled my daytime absences well. [- but not the nocturnal seizures, which I continue to take clobazam 10mg bd for].

But, being on carbamazepine for so long, it's side-effects (high SHBG, low vitamin D, high creatinin, then high cholesterol) became more problematic by late 2023.

I'm currently switching onto Brivaracetam, but finding that 100mg bd may be too high as I'm very tired compared to when on 75mg bd which seemed OK, (until some daytime absences after missing just one dose were witnessed). I'm not yet as comfortable on Brivaracetam atm, as I was on carbamazepine.

Overall, I will say, for myself carbamazepine was good for many years.

Epilepsy is not easy to control as it's not fully understood - possibly why there are so many AEDs 🤔. Also, we each can react quite differently to the same drug, plus meds can interact too 😬.

I hope that sharing my experience of carbamazepine is of use.

Wishing the best of luck to your son 😘!

[NicEllaDawn]

I would agree with you for an increase in the brivaracetam and then suggest maybe an alternative to the carbamazepine as something else may help instead! I am not a neurologist only a fellow epileptic so don't know what meds go together but I will say that I found that my tonic clonic seizures and absence seizures were well controlled as a child by Sodium Valporate (Epilim)! Have you tried that?

[Benmom]

My son was on carbamazepine for years and he developed osteopenia from it. So, we switched him to Keppra. Keppra controls his seizures so far and the only downside is the mood change. He gets angry easily now and he was a very easy-going person. Has anyone suggested Keppra?

[Shancock in reply to Benmom]

Thank you Yes we have tried Keppra but it did not help sadly, although it did not have any negative effects.We have recently started Zonisamide so far no good but its a really low dose to start with so we shall see

[Mybraveface]

As an update, I never settled on either Levitiracetam or Brivaracetam as a replacement for carbamazepine. I did some research myself and found this extremely helpful video which explains clearly in layman terms how the different types of epilepsy medications work. It was obvious after seeing this that Levitiracetam and Brivaracetam were not suitable replacements for carbamazepine. I used the information to suggest to my consultant that what I actually needed was a modern 'sodium channel blocker' type medication (wich carbamazepine is). He agreed, and switched me onto lacosamide, and I am now back to my former self. The lacosamide works in the same way as carbamazepine, but without the side-effects. I have shared this in a few replies, and as a separate post, and will continue to do so, as the information is invaluable for anyone taking epilepsy medication and wants to understand how they work !

youtu.be/rWSkwNfG2bc?si=SDA...(Not working as expected?)