I am new to the forum and would like to introduce myself.
My seizures started a week after my childhood vaccinations at 18 months old. It was later thought that it was a reaction to the whooping cough injection. I am now 44, and the number and the trigger of the seizures seems to depend on which drug I am taking. I am currently taking topiromate, but my neurologist is looking to change this because I suffer severe side effects. My seizures are still uncontrolled, with stress and certain food additives being triggers.
My seizures are mainly grand mal, but I have also suffered absences and myoclonic - what I call the jerks and where I end up throwing my dinner up the wall!
Because I have had so many seizures over the years, I now have memory, concentration and co-ordination problems, as well as being almost stone deaf and having tunnel vision, all caused by nerve damage.
I also suffer from ME/CFS and fibromyalgia, among other things.
While people are mostly understanding about the ME and FM, there is still a stigma in the UK if I have a seizure in public. Luckily my husband is very supportive and even my 5 year old is becoming complacent with "Oh Mummys on the floor again."
I cannot work, but try to keep my mind occupied on the rare day that my brain can think!
I have just come across this forum and would like to say that it is immensely interesting and helpful, especially as there does not seem to be that much on the advice front in the UK. Keep up the good work!
My seizures started a week after my childhood vaccinations at 18 months old. It was later thought that it was a reaction to the whooping cough injection. I am now 44, and the number and the trigger of the seizures seems to depend on which drug I am taking. I am currently taking topiromate, but my neurologist is looking to change this because I suffer severe side effects. My seizures are still uncontrolled, with stress and certain food additives being triggers.
My seizures are mainly grand mal, but I have also suffered absences and myoclonic - what I call the jerks and where I end up throwing my dinner up the wall!
Because I have had so many seizures over the years, I now have memory, concentration and co-ordination problems, as well as being almost stone deaf and having tunnel vision, all caused by nerve damage.
I also suffer from ME/CFS and fibromyalgia, among other things.
While people are mostly understanding about the ME and FM, there is still a stigma in the UK if I have a seizure in public. Luckily my husband is very supportive and even my 5 year old is becoming complacent with "Oh Mummys on the floor again."
I cannot work, but try to keep my mind occupied on the rare day that my brain can think!
I have just come across this forum and would like to say that it is immensely interesting and helpful, especially as there does not seem to be that much on the advice front in the UK. Keep up the good work!
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