Yep, Epilepsy week is now underway – what, you hadn’t heard? Yes, it is one of the slightly less well advertised awareness weeks. Still, here it is, and the underlying theme this year is information.
Well, although I haven’t exactly done my bit and absolved myself, that is at least a small contribution to the cause.
You know, I did appear in the local paper once for Epilepsy week a few years ago. The theme that year was employment, and I was slightly downplaying the workplace ostracism I was on the receiving end of, seeing as it was colleagues and not the management, and I didn’t want to lose my job.
As far as relevant epilepsy information goes, I think I’ve already covered a few of the basic points, so I wanted to use what remaining energy I have to go into specifics about treatment and diagnosis.
In order to get a diagnosis of epilepsy, you need an appointment with a Neurologist. Now, an epilepsy nurse (which I am lucky to have access to – not everyone does) once told me that here in the UK there is a drastic shortage of Neurologists; it’s too broad a field, requiring too many differing specialisations. It’s why you get really long waiting lists, and many of them work privately too. When you eventually reach your neurologist, s/he will probably refer you for an EEG – another long wait to get to one of the fewer locations where EEG tests can be carried out. For me, this meant a three month wait. Then you have to wait for the results to be analysed. Remember that epilepsy can only be directly identified if you have a seizure while strapped to the machine, so a lot of diagnosis has to be based on patient history as well. (I was “lucky” and has some spike and wave activity picked up on during my initial test.)
This means follow up appointments with the neurologist, and, where available, a forwarding to the Epilepsy nurse, who won’t also be dealing with head pain, tumours, strokes, parkinsons – all the other things that Neurology covers as well as epilepsy. For this reason, the chances of having a Neurologist who has a real interest in epilepsy are smaller than you think. Mine have tended to specialise in pain and migraines. My last neurologist (currently off sick which means I haven’t seen him in 18 months) didn’t really seem to know that much about the subject at all.
Anyway. Diagnosis. After you get a diagnosis, the long, drawn-out process of treatment begins. If you’re lucky, you’ll get on with the first medication they put you on, and the dose will be tinkered until your seizures dramatically reduce in frequency or halt altogether. If your epilepsy relates to brain trauma (I had an MRI as well as an EEG because seizures can also be symptoms of tumours) then surgery might be an option.
However, not everyone has such a simple solution. I’m currently taking my second type of medication, as I reacted badly to my first, my seizures still occur as frequently as daily (last one this morning; I’ve been going through a cluster), and I consider myself not badly off. Some people go through seemingly all the types of medication, and the side effects from some of them are really not great. In fact, on the leaflet, most anti-epileptic-drugs will warn you that side effects can include convulsions. The fact that this is an improvement for some people should say quite enough about epilepsy as a whole that I can safely sign off for now.
And again, Happy Epilepsy Week! Happy Information!