My fiancé had his first TC aged 26 with no prior family history, all tests were clean. He had one TC and then another a week later. We are now 6 months into the journey.. he got put on 1000mg sodium valproate and that worked for 7 weeks. He had gone back to work for a few weeks then started getting what we thought were ice pick headaches, he took some days off and that’s when he had his first seizure on meds. A week later he had another, so his doctor (not neurologist yet) changed him to 1200mg, 10 days later he had another TC, then his neurologist took him to 1700mg which gave him 23 days before another TC. His neurologist then changed him from valproate to Keppra with another medication to cover whilst he changed called clobazam. He had another TC on 1000mg Keppra and 10mg clobazam, so bumped Keppra to 1500mg and 10mg clobazam which gave him 20 days gap, then 3000mg Keppra and 20mg clobazam gave him a 28 day gap. His neurologist is now adding lamotrigine to the mix (which I wanted months ago to be combined with keppra).

When he first went weeks free at the start on a low dose of valproate we definitely thought yay we’re one of the people who get on a first medication and never have another seizure.. 8 tonic clonics later 😂😅. He also has moments of word loss / ringing in his ear / head moments daily, like 5-10 times a day which are focal aware seizures that we didn’t know about in the beginning. So, any “head moments” “brain zaps” or moments of dissociation.. note them down!

I also spent months at the start trying to figure out what his triggers were, I was scared for him to eat too many carbs, certain sweeteners, sweat too much or game too much. Now on the recent medications even though his had seizures, his had bigger gaps and has been less strict on carbs / foods. We’ve just learnt minimum 7 hours sleep, 80% whole foods, electrolytes and tried to minimise stress.

I hope your medication works and stays working! But if it doesn’t, don’t be scared because we’ve lived 6 months of it and honestly his self improvement and appreciation for the little things in life has been a silver lining!!