Shaky hands side effects of Vimpat [Lacosamide] or Briviact [Brivaracetam] have been taking them since April 2018?

[Adlon57]

Have very shaky hands can hardly type, various medical mishaps since then, in Jan 2018 had double seizure, broken skull, [later in July 2021 CT scan found this caused irreparable brain damage, Terminal] but typing almost impossible! In 2016 taken off Epilim, almost Parkinson's disease shaking hands, have been tested twice for PD both negative, now something similar? I have JME epilepsy since 1970, 400+ seizures, was told in July 2021 "next seizure probably be your last"! Aged 67, retired living on my own, has anybody using either or both these medications had similar effects?

[Jonnyfromdonny]

My hands shake or judder hard to type or write I'm on lacosamide still have seizures

[Adlon57 in reply to Jonnyfromdonny]

Have you been on lacosamide for a long time, and are you on any other epilepsy medication as well?

[Jonnyfromdonny in reply to Adlon57]

Yes and I'm on gabapentin 3 ti.es a day

[Adlon57 in reply to Jonnyfromdonny]

It could be that Epilim and lacosamide have something in common [type of medication?] that causes the 'shakes', an unknown factor, need to get some research done on it🤔🕵️‍♂️🕵️‍♀️?

[Adlon57 in reply to Jonnyfromdonny]

What sort of epilepsy do you have, and how long have you been diagnosed with it?

[Adlon57 in reply to Jonnyfromdonny]

Sorry Jonnyfromdonny I have just realized it could be a reaction just like I had back in 2016, I sincerely hope this is nothing like your situation? Thanks HU I thought I had hit a good patch, Epilepsy/Action, this could be a distinct link with Parkinson's Disease, VERY familiar to 2016🥴

[Jonnyfromdonny in reply to Adlon57]

My hands judder more when holding something

[Adlon57 in reply to Jonnyfromdonny]

It happens worse when I try to type, okay rest of time?

[Mybraveface]

I have had epilepsy due to temporal lobe surgery in 1989. For many years my epilepsy was controlled with clobazam and carbamazepine AEDs. Earlier this year due to side-effects from carbamazepine I was started on Briviact 100mg bd, and after a few weeks found I was getting shaking hands and legs while sweating and feeling confused. Briviact has been reduced to 75mg bd for about 3 weeks now, the shaking limbs and confused feelings have gone, and I feel much more 'normal' again. From what I can gather, Briviact is a fairly 'new' drug which they don't seem have enough experience to know an ideal dosage for as yet, - Plus of course, we all can react in different ways to the same drugs.

The brain is such a complex organ!

Hope you found this of use 🤞

[Adlon57 in reply to Mybraveface]

Thanks Mybraveface very recently my left hand badly affected via AZ vaccine, has suddenly come back to use,🖐 the stuff after three years, out of my system,👌 three years could not squeeze a grape with it, almost back as good as the right, this undoubtedly had something to do with my "shaky hands" and why it was especially bad recently, I saw my epilepsy specialist about it recently, was talk of a DAT scan again, my return to left hand normality, has meant I'm in a bit of a changing period, getting used to it🤗🤗😉 but as you say I am on Briviact 75mg always slight shaking since I started taking it in 2018, everyone has different reactions, having had epilepsy for over 50 years, running out of medication alternatives and being terminal [broken skull] have to tread very carefully?

Used to be an heraldic artist, many many years ago😏

[Mybraveface in reply to Adlon57]

Adlon57, I am very much 'with you', having been on my 'journey of hell' for 35 years now since age of 29. Feel extremely fortunate, and grateful to the neurology consultants in Newcastle upon Tyne. We all have unique stories to share and hopefully help others. I find it strange that you mention your left hand, as over about last 3 months I've felt numbness and tingling in my left arm and hand (mainly little and ring finger, from elbow down) increased, and I don't know why. I thought might be related to either Keppra or Briviact, but 'jury is out' on that, as it has improved over last few weeks - maybe a better dosage? Hadn't thought about it until now, but had my AZ covid shot about 3 months ago ? 🤔 Good to talk, and wish you well my friend 👍

[Adlon57 in reply to Mybraveface]

That is fully diagnosed, that was due to a colourful reaction in Feb 2021and April 2021 where I had two AZ vaccine covid injections, I have Schwannomatosis or NF3 [neurological condition] both in left arm, straightaway I had 'heart flutters' then in April two schwannomas/benign tumours opened up started to bleed, dramatic loss of use of left arm, 90% use of muscle, severe shaking, took three years to come back🤗 dramatic return, hit left hand with tv remote [lost temper😤] suddenly🤗 just those two injections, subsequent covid jabs no problem, but body having problems now sending weird reactions🤪 loosing coordination almost Parkinson disease like reactions, forgetting things, small stupid jobs, brain wrong signals, hope only temporary?🤫

[Adlon57 in reply to Mybraveface]

Hi Mybraveface had a look at your medical 'cv' I can see a lot of similarities with myself, the numbness was definitely an afterglow of AZ vaccine injections😵but I can see you like myself through the mill with epilepsy, the dramatic double seizure was when I was in the process of going from one set of medication, Lamictal and Fycompa to Briviact and Vimpat I was actually in my GP's surgery and having auras my GP rushed out of the room I can remember him leaving a 'yellow pill' next thing I remember eight hours later in Craigavon hospital waiting room? A couple of reasons of left arm, I had had a schwannoma/benign tumour removed from my left elbow, after 4 years waiting, for some reason my left arm has always had more than its fair share of schwannomas, I remember having a blood test in a local hospital, the Asian doctor was rather alarmed as my blood flew out when he had taken out the syringe, must have been approx three feet, my two sisters were with me at the time, laughter all round 😵🤭🤭🤭 I have had Keppra, but the Fycompa was easily the worst epilepsy medication I have EVER taken in the 54 years of my condition! Toppamax another contender, bad memories, what I can remember of both. Incidently have you been tested for Neurofibromatosis, NF1, NF2 or NF3?

[Mybraveface in reply to Adlon57]

Wow, coincidences all round! I went totally loopy on Topamax in about 1995!! Never had any a of the tests you mention- what are they specifically for ?

[Adlon57 in reply to Mybraveface]

My best mate named them 40 minute pill, he would ask me a question, 40 minutes later I might give him an answer, actually caught on in the Royal Hospital, an accepted nickname. Neurofibromatosis lumps all over the body, NF1, and NF2 are the more usual condition, but yours truly has his own personal specialist whereby benign tumours, cysts, grow on the nerve canals of the body underneath the skin hard lumps, anything from size of a grain of rice, sometimes even smaller to 'walnut' size which I had on my spinal cord in 1995-1997, have had 3 surgery operations, affect arms, legs, trunk and hands, does not affect head, currently have one on my right thigh. NF1 and NF2 can be a bit more serious affecting the whole body.

[Mybraveface]

Hi Adlon, I hope things are steady for you my friend. I have recently updated my bio, as over the past six month have had both depression and now suffering continued low blood pressure. I'm pretty sure a lot of my current issues are due to long-term use of AEDs and Benzodiazepine medications. We just have to keep fighting, and trying our best to look after ourselves as best we can. Once on this journey it doesn't seem to get any easier, that's for sure. I wish you well my friend ❤