Diagnosed at 24

Hello community 😊 I had my first tonic clonic seizure in April 2022, I felt like I had been run over by a train, whiplash and my tongue and cheeks were torn to shreds, I really could not move or keep my eyes open at all. This experience was so random, and I was just so confused.

Did I "see" my seizures coming?

The hospital sent me home that evening and I had another seizure in my sleep. Luckily my little sister has epilepsy too so I was in very safe hands with my family so I stayed home. Over the next few days I was put on 250mg of Keppra twice a day. With every seizure, my dosage was changed. But something I hadn’t considered is that for about a year on the run up to these seizures I was having ‘de ja vu’ moments that would last for 30 to 90 seconds and I would throw up afterwards. I was having these about 5 to 10 times a day. I thought these were panic attacks intensifying as I have had deja vu since I was little(but only randomly every now and then). This deja vu started happening as an aura right before a big tonic clonic seizure so I was happy I had at least a warning sign... but, little did I know, this was also a seizure, but a focal one.

My symptoms with epilepsy

My EEG showed that I do have frontal lobe epilepsy and generalized. I also do suffer with ‘staring moments’ where I zone out but I can still hear everyone around me, twitches on the right side of my face. Slurred/mixed speech and epilepsy headaches. I was then put on Lamotrigine 100mg twice a day as well as Keppra 1000mg twice a day.
I feel like a bit of a shell of who I used to be, I guess I’m still new to this as I’m so used to caring for my sister with epilepsy and I never thought it would be me.

Feeling empathetic for my support system

I feel really bad for my husband and mum more so than I do for myself. I can’t see myself having a seizure or even know it’s happening but they have to watch it happen and feel totally helpless. I’m just a big ball of emotions and trying to come to terms with this new condition and not being the rock I used to be but I know I’ll get through it, if my little sister can (and she is in a constant background seizure) then I know I definitely can.

It's nice to meet y'all!

This is my first post on a community! I thought it was finally time to relate to others and not be so alone through this.

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