I was on Epilim and Lamictal for my Juvenile Myoclonic Epilepsy, bad shaking hands, was it Parkinson's disease, found reaction to Epilim!

[Adlon57]

My specialist had retired in 2013, but my GP thought it was Parkinson's disease as my father had dad it, negative test, but found it was a reaction built up over the years of Epilim, my new specialist in Dec. 2016 put me on Fycompa and Lamictal, within a couple of weeks I wanted to take up drawing classes, artistic family, hands really steady I was 61 years old then, BUT really dangerous other side effects meant I had to get off Fycompa, causing smashed body breakages, violent seizures via combination of medications as I changed them, I have had one seizure since being on Vimpat and Briviact, but hands now 'fragile', tension or worry hands really shake [cannot use touchpad on laptop] have been on lisinopril for high blood pressure for over 12 years [thought I would include that?] then March 2020 diagnosed diabetes 2 [and isolation], and Feb. 2021 AZ vaccine made my hands, especially left practically uncontrollable {GRR!] but still very 'fragile' and to prove after 2nd jab in April left hand almost comical, unworkable, as effects of AZ wore off my hands, will my hands be able to get back to Jan. 2017 level, or will I be stuck with these essential tremors for the rest of my existence? A Parkinson's test in October 2021 proved negative again! Is there a way of 'working' these tremors out of my hands? Is there some sort of link between the effects of the Epilim and the effects of the AZ vaccine?

[EpilepsyAction1 Partner Epilepsy Action]

Hi Adlon57

I'm sorry to hear you are having problems with your hands. Regarding Covid vaccinations interactions with epilepsy medicine, Epilepsy Action have spoken to the MHRA (Medicines and Healthcare products Regulatory Agency) about interactions between COVID 19 vaccines and epilepsy medicines. And we've have been told that the chances of the vaccine interacting with any medicine would be very low because the way they work is different and a clinically significant interaction is considered unlikely.

Liverpool University have developed a COVID 19 drug interactions checker which is a helpful tool for people who have concerns. covid19-druginteractions.org/

We always suggest that anyone who thinks they have had side effects from a medicine reports this by using the Yellow Card Scheme. Reporting side-effects helps the MHRA identify any new side-effects or safety issues they might not have known about. Either you or the GP can report side-effects to the MHRA using the scheme by:

• Picking up a Yellow Card from your GP surgery or local pharmacy

• Filling in a Yellow Card online. yellowcard.mhra.gov.uk/

• Calling the Yellow Card freephone hotline: [phone]

yellowcard.mhra.gov.uk/

As with all vaccines and medicines, the safety of COVID-19 vaccines is continuously monitored and the vaccines will remain under close review. If the information changes about possible side-effects and/or interactions with epilepsy medicines we will update our COVID 19 webpage.

epilepsy.org.uk/info/daily-...

Regards

Diane

Helpline Team

[Adlon57 in reply to EpilepsyAction1]

My first reaction in 2016 WAS a long term reaction to Epilim, and the rapid steadying of my hands within two months, when I started Fycompa, and that I wanted to take up drawing classes verifies this. The second time in 2021 was a reaction to the AZ vaccine AND my Schwannomatosis, I had various schwannomas open up on my left forearm, I had surgery on my left elbow, to remove a schwannoma [baked bean size] in 2012. Originally there from March 2008, I had a minor stroke then the schwannoma appeared. I have had Schwannomatosis since 1970 finally diagnosed in 2016, I now have a personal specialist since May 2021! The AZ vaccine also had other effects, I have a fractured/broken skull, from double seizure in January 2018, affecting my equilibrium/balance, [also heart flutters another side affect] the news that "the next seizure will probably be your last" does not help matters! Although the use of Turmeric has helped my equilibrium/balance effect! I received a pfizer booster on 23rd November, which does not have any side effects, my equilibrium/balance effect has been improving since circa. Sept 2021.

[Adlon57 in reply to Adlon57]

Actually I have been under the 'microscope' in the last six months various tests/scans have been done, last middle of last month, results and full diagnosis still awaiting! As one of my specialists called me "a one off!" I am in the vulnerable zone so usually in the first line of vaccines!