I have suffered from epilepsy for about 19 years; I was diagnosed soon
after my 16th birthday.  My first attack was little more than a black
out while pushing a moped along the road; the 2nd attack included
convulsions this was on September 9th.  It was at this stage I was
diagnosed, I was prescribed 300mg of Phenytoin daily, lost my driving
licence for 2 years (though I didn't realise I had to notify the DVLA
and spent the 2 years, not driving, waiting for them to contact me,
thinking the hospital would contact them).
There are a number of suspected triggers including – alcohol,
cannabis, extreme stress, a combination of lack of sleep with poor
eating, etc.
The biggest hurdle I found was the diagnosis – I mean how could I be
epileptic??  This perception was not helped by the fact I was bought
up in Chalfont St. Peter, location of the National Society for
Epilepsy.  At the time (I don't know about now) it was also a
residential home for people with severe cases, to the extent that most
seemed (from the perspective of a growing lad) mentally handicapped.
Even now I sometimes look at it as a chink in my amour, though it does
depend on the current mood.
I've done a bit of reading recently and found that all the terminology
has changed.  I'll try and describe my attacks as best as I can using
the news terms and a description.  Generally my attacks are Tonic
Clonic, falling to the ground then convulsing anywhere from a few
seconds to several minutes.  After I appear to be regaining
consciousness I often have what I can best describe as a complex
partial, though everything I've read suggests a partial will precede
the tonic clonic.  The partial involves me getting up and walking
about (yes I've been known to take my clothes off also), mainly trying
to leave the area where I had the convulsions.  Apparently I can get
very abusive and although not inherently violent I will get angry at
obstacles, whether human or otherwise.  I have no conscious control
over my actions or strength and have been told even during these
episodes I am a lot stronger than normal.  3 occasions come to mind –
1 where I nearly broke one of my wife's ribs pushing her out of my
way, 1 where I regained consciousness walking down the pavement in my
socks with a newspaper in my hand (it was the Mirror, which I've never
bought!) returning home from the local garage or shops and finally
when I was strapped to a bed in hospital apparently to stop me going
walkabout, they finally let me go when I had come round, undone all
the straps and disconnected all the leads (drip, pulse monitor),
apparently my last words before being put in the ambulance were asking
where my cigarettes were and my 1st comprehensible, civil words later
were asking to go for a cigarette.
Fortunately my fits (so much for PC!!) are not that common the last
problems arising when my drugs fell below the bottom of the range
(with the doctors saying everything is fine a few weeks prior to the
episode where I ended up in hospital).  After that my medication was
reviewed and I currently take 600mg of Phenytoin a day.  A new doctor
started at my GP's and he showed a real interest in my case, he
transferred me to Epanutin capsules and kept a regular check on me,
then we moved.
My new doctors have been less than interested – I have had to ask for
my annual blood test 2 out of 3 years, last year the results never
came back and I am guilty as the next as I didn't chase them, I asked
the nurse when I went in for my test this year.  She phoned the lab
while I was there and found out last years – 7.5! (The range is
10-20!)
My next results are due back on Tuesday and although I've lost some
weight since then I can't really see them being within range.
AIUI – 600mg is the top daily dose for Phenytoin, I don't want to OD
on it but I also don't want to be a walking time-bomb.  Does anyone
fancy guessing what I'm likely to be given instead of/as well as?

TIA
--
Simon