Newly diagnosed with epilepsy - scared after a strange experience today.
Hi everyone. I'm hoping to find some advice and reassurance from people who might have been in a similar situation.
About 2 months ago I had my first tonic clonic seizure, which led to an MRI, an EEG, and an epilepsy diagnosis. Looking back, I now realise I'd actually been having focal aware seizures for around 3 years before that- I just put them down to stress and anxiety and never thought much of it. At their worst, I was having 4–5 a day, and they definitely got worse with tiredness and stress.
I was started on lamotrigine and I'm currently being titrated slowly- I'm at 125mg now. The focal aware seizures have reduced in frequency since starting it, but when they do happen they still feel quite intense.
Today though, something different happened and it really scared me. I kept getting that familiar feeling I usually get before a focal aware seizure- like a word on the tip of my tongue, or trying to recall a memory that I just couldn't quite reach- but it never fully developed into a seizure. This kept happening every 5 to 30 seconds for around an hour. It's calmed down a bit now but I'm still shaken.
One thing I'm wondering: I'm due my period in 4–5 days. Could this have any impact? I've heard hormones can play a role in seizure activity and I'm curious whether this might be connected to what I experienced today.
Has anyone experienced anything like this? Could it be related to the lamotrigine, my cycle, or is this a known pattern with focal aware seizures? Any advice or reassurance would mean a lot right now. 💙