Could Epilim and lacosamide/VIMPAT have something in common [type of medication?] that causes 'shakes',need to get some research done on it?

[Adlon57]

In 2016 I was taken off Epilim, I have JME epilepsy, I was on it for circa. eight years, with lamictal, but my hands shook so bad, fears it was Parkinson's disease, [my father had Parkinson's disease] I was 'tested' then subsequently again in 2021 both negative, I was put on Fycompa in 2016, the shaking stopped! I have been on Vimpat/lacosamide and briviact since April 2018 [in Jan 2018 I had a double seizure, which caused irreparable brain damage, diagnosed TERMINAL in July 2021 "the next seizure will probably be your last"] It has started again radical shaking of my hands, I cannot change my medication, I AM ALREADY TERMINALLY ILL!

[EpilepsyAction1 Partner Epilepsy Action]

I hope you hear from others on this platform, as sharing information and experiences can be a good idea.

Epilim and Vimpat can both have side-effects such as movement disorders and tremor. 

If you haven't already, it would be a good idea to speak to your epilepsy specialist, epilepsy nurse (if you have one) or your GP about the shaking returning. 

If they think the shaking is a side-effect of your epilepsy medicines, they can review your treatment and discuss the risks and benefits of any potential changes with you. Alternatively, they may be able to prescribe something to help stop the shaking. 

They may also be able to advise whether another test for Parkinson's is necessary. 

Can I just check you also know about our other services?

We have our Talk and Support groups (epilepsy.org.uk/support-for-you/talk-and-support-virtual-groups) and befriending service (epilepsy.org.uk/support-for-you/epilepsy-befriending).

We also have a membership offer which is designed to help people stay up to date with all the latest epilepsy news, views and research: epilepsy.org.uk/involved/join

Finally, if you think it may be helpful to speak to one of our advisers in more detail you can contact us by live chat or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm: epilepsy.org.uk/support-for-you/the-epilepsy-action-helpline

Regards

Jess

Epilepsy Action Helpline Team

[Adlon57 in reply to EpilepsyAction1]

Thanks Jess have disturbed a lot of cobwebs here got hold of some old medical contacts, good to hear from them, they have all my relevant details. Unfortunately the talk and support groups have fallen through partly due to the political debris over here, in Northern Ireland, politics is ALWAYS first, health always suffers due to this rigmarole!

Epilepsy is only one on my colourful medical cv, not as an active groaner as I used to be? Appreciated for all the possible contacts!

My father had Parkinson's disease, had a couple of near 'misses' like a dark shadow, just been 'cleared' of Prostate Cancer, PSA tests every six months from now on! Could another reason for my shaking, be my diabetes 2 going though various metformin 'concoctions' at present?

[Angie140720]

Hi, my brother developed a tremor on epilim but not sure of the dose for him and when I tried to go up to 1000mg per day of epilim I also developed the tremor down one side so reduced back to 800mg and they introduced a second medication instead. It's that balance of side effects versus benefits which is a hard balance to find with epilepsy but worth the effort if you can find it. Good luck.

[Adlon57 in reply to Angie140720]

It was the length of time on Epilim, that caused my shakes, some other medications their effectiveness, wears off, maybe that sort of thing? I've always been on a secondary medication, I was on lamictal/lamrotgine all that time, from 2013-2016 I did not have a neurologist at all!

[EpilepsyAction1 Partner Epilepsy Action]

It's a shame about the local groups. But you would be very welcome to join our virtual talk and support groups epilepsy.org.uk/support-for-you/talk-and-support-virtual-groups

As we aren't medically trained, I can't say if your shaking may be diabetes related. It would be a good idea to speak to your doctor about this. 

Regards

Jess

Epilepsy Action Helpline Team