I am a 37 yr female who at the age of 14 whilst carrying out a weekend job in a clothing store started to get jerks in my arms whilst serving customers.
This was particularly bad when I was working on the till on busy days having to think quickly. I found it upsetting and I told my parents but we thought it was just a one off.
Later that year I travelled abroad for my parents wedding anniversary and after little sleep on a long flight I had my first grand mal seizure shortly after waking and being fixated on the fan above the bed. When I got home we went to a neurologist who took my history and diagnosed me with JME.
At the time I hated being different to my friends and felt upset that I had these jerks as I just wanted to be a teenager like everyone else. I started on sodium valproate which was increased over time as I had more seizures in my teens particularly after late nights and drinking too much alcohol which teenagers tend to do. After increasing my dose to a point where I rarely had jerks I took all my exams for a place at uni , passed my driving test and took a gap year travelling.
I was lucky and although I had late nights I didn’t have any seizures whilst away. Once arriving at uni I still wanted party till late and meet friends to be like everyone else. I was lucky to not have any seizures at this time but a few jerks which caused me to become quite panicky. I learnt to lie down and usually these would pass. At uni i met my now husband who was always supportive, fun and sporty. I always thougbt some boyfriends may think it was a bit of a burden taking me on with epilepsy but I managed to live a very normal uni life with a great boyfriend and parents.
After 8 years and only 1 seizure after 5 yrs I was soon to be getting married. We knew we would want to have children but were also aware of the findings that Epilim increased risk of malformations and autism which filled me with worry so I went to see a consultant who specialised in this area. We weighed up the pros and cons of staying on epilim or changing or stopping and the danger of having a seizure outweighed the percentage increase of having problems with my baby if I stopped it.
I did however try to change to lamictal but I became very emotional and moody so went back to epilim as I was getting married shortly. I started taking folic acid and fortunately soon became pregnant and gave birth to a girl all the time being seizure free. At all the scans I worried something may be wrong but she was perfect and healthy.
18 months on I had another little girl and again she was healthy thankfully. I did have one fit when I was pregnant but I was stressed trying to finish my work on a computer and ignored the warning signs of jerks. I fortunately was at home on a carpet with my father with me.
It wasn’t until a few months after having my second I had a late night and drank a few glasses of red wine that the following morning whilst she was crying and I was stressed trying to get a bottle ready that I fell on the stone kitchen floor hitting my head. I then could not remember what happened but found myself and baby upstairs in by bedroom.
When I awoke disorientated I managed to ring my husband who got my Mum round quickly and sent an ambulance. I cut my head badly.
I then increased my dosage and since have been seizure free 6 years on with healthy little girls showing no sign of any learning problems thankfully. Although I panic sometimes and feel anxious I put this down to worry about having an actual fit, I now get up slowly in the morning, drive my children to work, have run my own business and travel quite a few hours weekly.
I do have a flexible job which helps and I enjoy a glass of wine just not in excess and have recently decided to go back to trying lamotrogine as a drug of choice. I’m on both at the moment but so far I have felt fine and manage to not feel abnormally tired.
I think now I am in my 30’s my lifestyle is much more sensible. I don’t tell people immediately that I have epilepsy unless they may need to know as aside to epilepsy I am a normal person! I don’t want to be judged in any way as I still feel there is stigma attached to epilepsy. I am managing very well with what I at times feel is an unfair, horrible affliction but with a now relatively healthy lifestyle I feel so fortunate to have two lovely girls, supportive family and friends around me.
I hope this story gives hope to people that may only see the negative side of having epilepsy and give them hope they can live a relatively ‘normal’ life.