I went for about 7 years (age 14-21), initially having seizures occasionally, then towards the end having tonic-clonic (grand mal) seizures almost weekly and absence and myoclonic jerk seizures almost daily. After trying two kinds of meds that didn't work, I found my miracle cure! I only had one more seizure soon after starting taking Epilim.
That was until this week. I'd been seizure free for about 7 years. In that time, I've passed 3 degrees, including a PhD, got married, started a great career and my husband and I were just starting to talk about having a family. Last week we were on holiday in the Swiss Alps with my family. It was an active holiday, with hiking and mountain biking and we arrived home late on Monday evening. I had to be up for work on Tuesday morning, but I'd slept well every night.
I had a little bit of stress Wednesday morning as I had to get a lump on my breast checked at the hospital - but, as my GP had told me it was likely to be, it's a completely harmless fibrous growth. I started to feel a bit unwell on Wednesday afternoon, and when we went out with friends in the evening, I insisted on leaving straight after we'd eaten, as I was really struggling to engage with those around me, and I got into bed as soon as we got home, about 8.30!
Thursday, I felt a bit better, but when I arrived home from work, I realised I'd done two things I hardly ever do - left me keys at work, and let my phone go dead, so I couldn't even phone my husband to ask him to hurry home and I knew he was planning to go swimming so could be a couple of hours. Luckily, my kind neighbours let me come in and chat to them until I was able to get hold of my husband on their phone. It wasn't long after I'd spoken to him that I told them I felt faint and asked for a glass of water. Of course, the next thing I remember is the paramedics taking various measurements from me. Luckily, the neighbours knew about me having epilepsy, only because they'd asked me earlier that evening whether I drive and I'd explained why I don't (and that I'd just this week sent a medical questionnaire to the DVLA hoping to get a provisional licence!). Also luckily, they are wonderful people who don't scare easily and have since been to check up on me!
Of course, I went and checked all my meds, but I'd not missed a dose. A while ago, I did reduce the dose, under the doctors supervision, but I think the last change must have been 2 years ago. Perhaps it was exhaustion from my holiday, but that is hardly the most exhausting thing I've had to deal with in the last 7 years. Same with the stress of the breast examination. I never used to know anything was wrong before I had a seizure and this time I'd been saying I didn't feel well for 2 days beforehand, and in particular felt faint immediately prior. I wonder whether I had a bug or something, too? Perhaps it was a combination of all these things? Like I said, it's also out of character for me to do things like forget my keys or to charge my phone.
It was certainly not the worst episode I have ever had, but it is a horrible stumbling block after all this time. It's really only been in the last 2 or 3 years that I've felt in control of my own life and now that's questionable again. I've already rung the DVLA to cancel my licence application and although I hope this won't effect our plans for children, my husband and I obviously are now very eager to talk to an epilepsy consultant.
I just really want to know whether others of you have had similar experiences. I suppose I was starting to think I was cured and perhaps it is good to not have that delusion, but it has definitely knocked my confidence.