My seizures started a few weeks after I was discharged from hospital, around April 2014. At first it didn’t occur to me what they were, until they started recurring in exactly the same manner and at exactly the same time each month. So I made an educated medical guess what they were (temporal lobe seizures), told my team (and struggled to convince them I wasn’t over interpreting things) and eventually had an EEG done in December 2014. I wrote a post about my seizures; check it out here.
But that was normal. So I thought that was the end of that.
However, the new year came and went and by mid-January 2015 I had had 2 more since my EEG. In all honesty, I didn’t really expect the EEG to highlight anything. After all, I didn’t have a seizure during the EEG, so it wouldn’t make sense to have an abnormal EEG anyway. Half a year passed by and I was still having them at the frequency of roughly once per month and at some point in June 2015, a letter fell through the letterbox informing me I had an appointment with a neurologist at an epilepsy clinic.
Finally. Perhaps now I could get a confirmation (or not) of my suspicions. Granted, being seen by a neurologist involved a lot of work – I had a 10 page questionnaire to fill out that seemed more like applying for a visa than explaining about my seizures. The day approached and I went with my boyfriend, so I could have an external memory of the consultation, just in case. I presented my questionnaire, gave my history, and met with the very concise response of “Yes. It’s quite obvious that you have epilepsy.”
I knew it!!
But as with the majority of my story, I’m often right about my own diagnoses… and this is often a bad thing. We then spent a while discussing treatment options and future plans, the conclusion of which was: Tell the DVLA, start on lamotrigine and see where we go from there.
I’m writing this about 2 months after my diagnosis, and I’m pleasantly surprised to say that I have had relatively few side effects from starting my anti-epileptics. I’m still in the process of titrating the dose up to what it’s meant to be, and everytime the dose increases slightly I get a small side effect for a few days… But thankfully it fades. The best part is, I haven’t had a seizure since the 6th of June, 2015. Only got until the 6th of June 2016 now until I get my licence back…
I think the weirdest part of this whole situation is not the condition. Sure, actually experiencing my seizures are very, very strange, overwhelming and rather trippy. I got used to them once I figured out what they were, however. The weirdest part for me is getting used to calling myself “epileptic”. Saying I have “epilepsy”. Something I never thought I would say, but then again I suppose I never expected that I would ever have to utter the phrase “I had a stroke” at this age. I suppose this is a recurring theme with illness – indeed, a lot of people I have spoken to about having an illness have agreed that one of the hardest parts is accepting that your idea of yourself has changed. That you cannot apply for research projects looking for “healthy volunteers” because… you’re not healthy anymore (okay maybe this point only applies to me). You have a chronic illness. You spend your whole life trying to figure out who you are, and when you have it figured out, it gets erased in an instant. I’ve said it before, but I feel this acceptance of your new self, your new status in your life is paramount to assisting recovery. You might not be able to change what happened to you, or what you went through, but you can change the way you deal with it.