I have J M E since the age of 14 I am 65, and have had over 400 + seizures, since 2013 I have seen "epilepsy specialists" four times!

[Adlon57]

In that time, on Epilim and lamictal, side effects of Epilim, meant I was tested for Parkinson's disease, severe shaking of hands, [negative] (my father had had Parkinson's){one. two} then new specialist {three} in December 2016, I smashed my chest, broke at least 5 ribs in February 2017, [tried suicide three times], Fycompa, was independently diagnosed by a complete stranger in a local hospital, prebalin, [side effects which reacted violently with one of my other medical conditions, Schwannomatosis, I stopped usage myself after 6 days] {four} had a double seizure in January 2018, in the process of changing medication [on my own particular choice of medication, to be fair not much choice left?] broke skull very badly, by June 2021 in hospital visit told by hospital doctor "any more seizures will probably be your last?" Since my last face to face consultation in April 2018 I have had one seizure in December 2019, now on borrowed time. Not very impressed with Epilepsy care in this part of UK? Although since May 2021, now have my own personal specialist for my Schwannomatosis which I have had also since the age of 14, finally diagnosed in 2017! [I recommend her, regular contact via phone and email!]

[Adlon57]

Maybe I should have mentioned ALL my epilepsy records, before 2013 were lost as well 🥴Someone trying to sweep me under the carpet?🙄