Life on phenytoin

One of the main reasons driving me towards finding a permanent solution is the side-effects of the medication. I was initially offered valproate but had one look at the side-effects and thought,"Yeah, that sounds like fun, but is there anything less... disastrous!?" Well, at number two on my consultant hit list was phenytoin, so gave that a try. After one year am regretting it.

Firstly, I was given 200mg once a day, to be taken in the evening. It very quickly gave me insomnia so I changed it to a morning dose - later when I met the consultant he agreed that was a good idea.

It also makes me vacant and often just brain-dead, so some days I drop it to 100mg - yes, very naughty but it's my life. Actually feel more clear-headed when I don't take it, but I'm aware it's a juggling act. The wife of a neighbour of mine in Thailand is on 300mg. She's half my size and often walks around like a zombie. Unlike myself, they think doctors are divinely inspired, or at least their orders must be obeyed as if they were sergeant-majors.

After about 3 months I noticed my eyesight suddenly deteriorating, becoming long-sighted. Now as I'm normally slightly short-sighted my in-focus field of vision is going to shrink to about spitting distance.

Libido seems to have walked away like a eunuch in a whore house. Actually this gives me an idea! Any experiences of either Viagra or Cialis (or generics thereof) combined with anti-convulsants would be welcomed. The way Viagra works makes me think it won't be so great (wasn't great before the meds) but Cialis works differently and, from experience, is fine (so far).

Did I mention being brain-dead?

After about six months one of the more worrying side-effects. Thought it was just weight loss but was actually a loss of strength, loss of muscle definition and bone mass. Was turning into a weed - well, OK, a six foot weed but spindly nevertheless. Finally had a general blood test and was as fit as a fiddle! Well, almost. Slightly low folic acid level, and no, am not pregnant. So have recently started on folic acid supplements, on top of my usual B vitamin supplements.

As an aside, here's an example of the nanny state being a prison rather than a sanatorium. I had B vitamins given to me by my doctor in Thailand, to help heal the nervous system. Come to the UK and my GP here firstly states that there is no proof vitamins do anything, and secondly tells me it is so easy to overdose on vitamins that doctors don't want to be sued!! Two weeks later the same doctor puts me on vitamin B9 (folic acid). I ignored him and keep taking the industrial strength B's.

Did I mention that short term memory is shite?

My last consultant suggested I change medication. I asked him what about the op? He said it was only done as a last resort (on the NHS). I said to him to fast forward to that time. He refused. I left and will get a second opinion. Depending on that I'll see if I will swap meds - it's an experiment on myself - but there are a dozen meds I could try before the NHS can be bothered to consider an operation.

Experiences of other meds welcomed - to avoid confusion will create another post if deemed necessary.

Has the phenytoin helped my seizures? Hard to tell as don't have a doppelgänger to act as control. Have mini-seizures perhaps once or twice a week, although haven't fainted in nearly a year, but have had maybe 3 or 4 close episodes. Comes in clusters, so chaotic.