Deanne...

I began having seizures early in puberty- about the age of thirteen. It started with a jerkiness of my hands or arms or body,that I was aware of but couldn’t control, then later, became major convulsive seizures. However it never greatly worried me, as my mum had the same sort, so I had a fair understanding of it. I have a type called Juvenile Myoclonic epilepsy- juvenile because it starts usually in puberty, and myoclonic because you get these strange involuntary jerks at times. A bit like when you are falling asleep at night, and you sometimes jerk awake.

Once the doctors diagnosed it as Juvenile Myoclonic epilepsy (JME for short) and I was put on the correct medication, I rarely had a seizure. As an older teenager, I smoked and drank, and I soon discovered this made the seizures worse, so I gave up doing both.

Today, I am married, and have two young children. I had no real problems with my pregnancies, and both children are fine. I take Sodium Valproate as this is the drug usually given for JME, and I took it all through my pregnancies.  I will have a tendency to seizures and jerks all my life as JME is a lifelong form, but its also a type which can usually be controlled with the appropriate medication, and by minimising triggers. The triggers for JME are very specific- flashing lights, alcohol, lack of sleep, and to a degree, my hormonal cycle.

I don’t feel epilepsy has greatly interfered with my life. I have always been upfront and honest about it, and most people I have come across have been ok with that. I drive, and I am very active. Besides running after two small children I go to the gym three times a week. One problem I have found is that I have gained weight on this medication,  and if my weight changes much, I can sort of ‘outgrow’ my epilepsy medication, and then I know because I start getting the jerks again. I suppose the dosage is calculated to a degree on weight, so I try to be careful about this. Another problem was when I started at the gym, they told me to drink lots of water. I did drinks heaps, and I began jerking again, so I think I was drinking so much water I washed the medication out of my system too much. I don’t really have any advice to others, except make sure you have a good specialist and GP: talk to them honestly about any concerns or problems you may be having, and then just get on with life.