It's days like today that I realise how lucky I am to be living where I do. I have access to an epilepsy nurse specialist who I see approximately every six weeks (I did get a little lost in the system recently and not see her fro some time, but mostly it is that often). When I was first diagnosed, I just accepted this access as normal, especially since there are so few neurologists nationally, (the waiting times can be over six months) and they can take the pressure off these consultants so well. But as it turns out, not everyone has access as good as mine, which I find quite ridiculous, given how common (and complicated) epilepsy is, and the necessity for freqent medical consultation that many with epilepsy need in order to balance medication and maintain control over seizures. For example, today my epilepsy nurse and I discussed lowering the amount of medication I am taking, to reduce any possible side effects (ironically enough, one of the potential side effects listed on some anti-epileptic drugs - AEDs, as they are often abbreviated to - is convulsions). If I had to wait for a neurologist to approve each and every change, I could be years doing this. Literally. I last saw my neurologist in November, and I am scheduled for my next appointment in, wait for it, April.
That's a 17 month gap between my appointments, admittedly because my specific neurologist has apparently gone on long term sick leave, but still, the point stands. A medical professional once told me that here in the UK we have about 30% of the neurologists we really need, because the "speciality" is so vast and has so many different areas to cover. A typical neurologist can be called on to diagnose epilepsy, treat patients with brain tumors, those with persistant pain or migraines, parkinsons patients; anything involving the brain really, which is a huge area. Most tend to specialise somewhat in one particular area, which means that when you see a neurologist, you might not be seeing one who has much of an intrest in your condition. I know that my neurologist didn't actually know all that much about epilepsy (for his profession at least, he still obviously knows enough to be competant).
I had another seizure today, too. Just before going in for my appointment as it happens, which was almost a good thing. It was still bad that I had a seizure (and rather annoying, too), but at least with my epilepsy nurse there, no one panicked and started calling ambulances or anything like that. I'm lucky in that I have never seriously injured myself during a seizure, although lots of people do. The worst I've ever done is a toss up between knocking my head rather hard and scratching my face enough to leave marks for a few hours. So for me, calling an ambulance just leads to a lot of fuss and bother, a cannula being plumbed into my arm, a needless trip to A&E, and then the hassle of trying to get home again when I come round enough to convince the nurses I'm actually fine. If you ever see someone having a fit, check to see if they have a medical bracelet or necklace. Unless a fit has been going on for more than five minutes, or they've stopped breathing, in most cases you don't actually need to call for help. Just make sure they don't hit their head and, if possible, put them in the recovery position. Oh, and never put anything in their mouth. Ever. You can't swallow your tongue during a fit, but you can choke on things that people put in your mouth.