I am 63 years of age had Schwannamatosis [and Juvenile Myoclonic Epilepsy] since 14, diagnosed since 2017, I feel I should be sharing my experiences with this rare condition with fellow sufferers and specialists, I am retired live on my own, even have a high pain threshold, examples were that I slashed my right hand, the female doctor 'patched' up my hand, I tried to 'chat her up', I regularly dislocate my right shoulder, a side effect of a epilepsy seizure, I reset it again despite the grimaces of people nearby; I have been taking 50 mg Briviact for my epilepsy [with 400 mg Vimpat] and having regular recollections of long term memory gain, I would try and recollect something during the day, wake up in the morning, with a large part of that memory and usually more regained, like a life jigsaw puzzle [I had a small stroke in March 2008, so memory usually pretty fuzzy] but now embarrassing friends and family with fresh recollections? ; I have had epilepsy for 49 years, but this side effect has ONLY happened when only taking Lamictal/Lamotrigine on its own, it is like an electric shock, only when trying to get to sleep, the moment of passing into semi-consciousness, I could be shocked into shooting out of bed, sometimes for a long distance, my heart rate so high that it would take an hour to calm down, sometimes it would happen again when trying to gain sleep again, it would not affect the number of seizures I would happen meantime? These 'electric shock' episodes have been passed on to various epilepsy specialists, I have never heard of anybody else having similar reactions to that substance? ; in 1997 I had an operation to remove a 'lump' on my spine, later proving to be via my schwannamatosis, but I was administered with morphine, supposedly for circa. 3 hours, but 2 1/2 days later I awoke, I had a rash which lasted for at least three weeks later, anybody else had a similar episode with this substance?
They could all be connected but being so unusual I thought I would write them down! I am open to any relevant recognised authority on the particular conditions wanting to do further research on these subjects, being retired and living on my own, open to suggestions, willing to give my name and contact details, my general health AT THE MOMENT is pretty good, no seizures since april 2018, since starting the Briviact! Although getting 'grilled' is out of the question, a long term side effect of the epilepsy condition, being under verbal pressure could set me off?
all the best Shaun P. Cheyne
