In two weeks, on the anniversary of the day that I suffered this unexpected but life threatening attack, I will go for an MRI brain scan and, hopefully, I will find out soon after that the blood has finally drained away from my left frontal lobe. If not, then other, probably surgical, procedures may be necessary but let’s not go there now.
Today though, just two weeks short of when I first made their acquaintance, I finally come off my daily course of anti-seizure tablets, phenytoin or Epanutin, to give it its catchy marketing name. In hospital I was on a daily dose of 500 mg., when I was allowed home this was reduced to 375mg. and today I took a tiny 25 mg. before taking a fond farewell from these drugs which have apparently stopped me having another seizure since the two grand mal seizures I had on that fateful day.
It has taken four months to come off them in fortnightly reductions of 50 mg. – if I had done it any quicker than I would have certainly have had a seizure. These are grown up drugs for sure and the reduction was a major challenge for my very limited arithmetical abilities. I had several panic moments when I couldn’t remember which ones to take.
I don’t want to be like those poor patients who obsess on their drug regime, entertaining long-suffering fellow party-goers with stories about their side-effects and minute dosage details but I can see why people get that way.
I was told I had to take my tablets every day at around the same time, 8.00 am, that I should never miss a dose and that I should monitor myself for side effects and any signs of a seizure or even of a drug-reduced potential seizure. It has been a year of Godot awaiting and, for me at least, this period may be about to end, so allow me a moment of unhealthy obsession.
They are pretty things, phenytoin tablets, my favourites are the livid green of the 300mg.
and I am quite fond of the episcopal purple of the 25mg. but maybe that is because they will be my last ones.
The 50mg ones are an insipid pale pink and the 100mg. are an unnecessarily show-biz orange – I think that drugs need to have serious adult colours but then I had to see them every morning and I needed to have a certain amount of respect for these little life-savers.
So here it is, ladies and gentlemen, my last one! Now, for the first time in a year, my body’s chemistry will begin to get used to being drug-free. A moment for celebration I think even if the main reason for me coming off phenytoin is that its long term use damages the liver.
I have been very lucky. I am still alive, I haven’t had another seizure and I do appear to be getting better so I should say thank you and farewell to this drug which gave me a fair share of side effects including hand trembling, itchiness, nervousness, uncoordinated movement, gum disease and dizziness but which at least spared me some of the other more dramatic, if rare, problems listed in the rather scary leaflet: Hepatitis or liver damage, changes in the shape of the penis, the growth of abnormal body hair, joint pain and irreversible brain injury. For these mercies, thanks phenytoin.
I read in the newpapers today that there has been an interesting scientific development in the understanding of the placebo effect where we are supposed to imagine the beneficial powers of drugs which are really making no difference. Apparently psychology does effect our physiology – our expectations do release chemicals, in the spinal chord which communicate a natural form of pain relief to the brain. So, whether they worked or not, I have at least believed that my drugs were doing me good just as I also believe in the magic powers of that wand given to me in hospital by a caring relative.
The sparkling fairy queen wand, so wonderfully unlike the scientific instruments used on me at this time, sat next to my bed through the worst part of my illness and, only half jokingly, I asked each member of my medical team to wave it over me and wish for my recovery just in case the other treatments failed. They all did it, consultants, fearing for my sanity maybe, doctors, humouring me, nurses, entering into the spirit of the event and delighting in seeing the consultants fall under a magic spell, syringe-wielding blood-testers, the woman who gave me my meals and the cleaning staff, some of them not understanding English, all took turns to wave the magic wand. Part of the deal was, naturally, that they could have a personal wish too. It was amazing to watch the intense concentration on some of their faces, eyes closed tight, when it came for those wishes.
I hope the magic worked for me but I also hope that the personal wishes of all the wand wavers came true too. Now that I am off the drugs, a bit of magic is not to be scorned.