Okay, first: Don’t panic

I’ve had three seizures in the last few months playing WoW, should I stop playing? The thought never even crossed my mind until someone else brought it up. The thought that did cross my mind is whether I should be back on Topamax? I really hate anti-seizure medication, but with migraines lasting up to a week, auras lasting for hours and more than six seizures over the summer, I’m beginning to feel reckless for leaving it untreated. I prefer to avoid drugs as much as I possibly can as the improvements are usually limited, but the drawbacks aren’t, but where is the tipping point where symptoms and risks are worse than side-effects and drug complications? As it often goes, when there’s an Option A and an Option B and you’re not sure which to pick, maybe Option C is better?

I went off my anti-seizure medication on a very strict trigger avoidance regime and it worked reasonably well for me. Well enough that my doctor was happy to support my decision as long as I was willing to stick to the rules. Which rules, now lets see:

  • No late nights, early mornings or lie ins: I’m an erratic sleeper and part of it is inevitable – seizures and migraines make me sleepy and pain keeps me awake – but I delay going to sleep and delay getting up.
  • No stress : I’m a worrier and that’s optional.
  • No alcohol, recreational drugs or medication that lowers the seizure threshold: I’m good on the second and third, but I slip a little over the summer and at Christmas on the first.
  • No skipping of meals:  I’m very bad at remembering to eat and when I have a migraine, I don’t want to see, smell or taste food. I want to be left alone to sleep the sleep of the dead.
  • Trigger foods: Although food isn’t traditionally considered to be a seizure trigger, I have migraine-related seizures and certain foods do trigger migraines. Like chocolate, caffeine, certain preservatives, cheese, pickled foods, red wine, tomatoes, sausages, bacon etc. Pretty much all my favourite foods are on the list and I find it difficult to completely and entirely cut it all out.
  • Fatigue: I can’t think of ever having a seizure at a time where I wasn’t completely and utterly exhausted. I ignore feeling tired and it’s only afterwards that I realise how resting a little more and doing a little less can make a big difference. No raiding on Wednesday night when we spend Tuesday going out.
  • Pay attention even to the things you can’t do anything about: I’m quick to simply ignore the things I cannot change, but when these triggers crop up I can avert crises mode by being stricter on other things. Like no chocolate and getting plenty of rest. Things like heat, hormonal cycles and being unwell/feverish isn’t a direct cause, but definitely contribute.
  • Flickering/flashing lights: I try to avoid these, but I’m just not willing to stop playing video games altogether, stop watching TV or stop going out when the sun’s being pesky or refuse to enter buildings with fluorescent/strobe lighting. Well, except maybe the last.
  • Electrolyte imbalances: I’ve always had issues with low magnesium, potassium and calcium levels for various reasons, the most prominent being as a result of asthma, adrenaline shots and other asthma treatments. Note to self: when asthma medication is adjusted, also increase supplements.

I still feel a little reckless holding off on more drugs, but I also feel pretty strongly that there are other things to try first. Lifestyle changes are side-effect free. I’m not going to stop doing the things that I enjoy doing, but I have to pay more attention. It gets tiring to always pay attention to what I eat, when I eat, how much I sleep, when I sleep, how much I move, how I move, when I move and in between the myriad things that make other things go wrong, I forget to notice and stop caring a little. I stay up late talking and hunting down the very elusive frost lotus, I go out and still on occasion leave the wheelchair in the car, I sign up for raiding because I want to even though I’m not feeling great, I keep meaning to switch to decaf and I don’t let other people help nearly as much as I should. I may be delaying the inevitable as I so often do, but if it is inevitable, I’ll get there eventually anyway, but if it’s not, if it’s avoidable, if there is just the smallest chance that it’s avoidable, I’d rather stave off a little longer.