Hello Bazwheat, can you please introduce yourself in a few lines?
Aged 72 years. Ex-toolmaker / youth leader/ foster parent/ residential social worker. Married, two adult children, two dogs, two tortoises.
Tell us please when at what circumstances were you diagnosed with epilepsy.
Six months after getting married in 1970 had fit during sleep at night, bit tongue badly, but at least it was proof to me that something had happened! Several months later, second fit. Married couple staying with us both times blamed themselves for my fits, but we did not find out for some years, when they finally visited again. No previous indications except that my mother said that I had had bilious attacks when younger. [fits ?].
What medications were you put on from the beginning? How has your treatment plan changed since?
Started on Phenobarbitone and Epanutin, like zombie, had six months off work, then put on safer job [no machines] so restricted to bench work only. No driving. Since, then medication changed to Lamotrigine only.
What other conditions have you developed and how are they linked to epilepsy?
Epilepsy has resulted in loss of memory, no recollection of wedding, or anything pre-1970, including living on Isle of Wight until I was fourteen, before moving to Somerset.
Hydrocephalus. I kept falling over backwards, down the stairs, crossing roads with traffic coming to a halt to pick me up, dog walking in fields. Loss of confidence. Lumber puncture - immediate cure. However did not last long, so sent to hospital for brain shunt. Went to Bath Circle private hospital [care of NHS] for insert of shunt in brain.
Now I have a lump on skull where non-return valve is situated. Tube from centre brain cavity to valve, thence down tube, neck, chest, and drains fluid into my stomach. I do not fall any more.
Driving is a big concern for people with epilepsy. You seem to be able to continue driving despite your diagnosis.
I had to stop driving for 3 years [law at that time, now only one year] after first diagnosis. Then I saw consultant who said that I could drive again.
Did you have to adjust your lifestyle to your diagnosis?
Already vegetarian, no change, except no alcohol, dangerous activities, viz. cycling, trampolining, cliff walking, etc.. I had to be supervised if any of above.
What is your opinion of the epilepsy care services provided for patients?
No care services, except phycologist 2 X a year for three years, none since.
In what way does epilepsy affect you most?
My condition affects wife more than me because I am now a different person to the one she married. In-laws were very upset even though I was not diagnosed until at least six months after marriage! Said that I should have said before, even though I was not aware at that time. [I think that they were afraid of not being able to cope, and worried about my wife and they way that they perceived our future to be going to be curtailed].
Are you part of any epilepsy support group? Have you ever met other people with epilepsy?
No support. I did meet with local epilepsy group several times, but they were so inward looking and dramatized their own conditions to the exclusion of others in the group, that it made for depressing experiences. I gave it up, have met others with epilepsy, but generally keep my condition to myself because people are so ignorant of the illness/situation that they are often embarrassed, and panic, so tend to keep their distance because they feel that they would not know what to do in the event of anyone having a fit.
What would you recommend other people suffering with epilepsy?
Try to live as normal a life as condition allows - but do not hide condition, or its effects. Ignorance is not bliss, it can lead to panic, which can have fatal consequences for the person with epilepsy. So let at least one member of any group that one might belong to know, so that they are able to deal with a situation when and if it occurs.