Hi my name is Nicole, I am 16 years old and I was diagnosed with epilepsy at the age of 15, after over a year of a ‘non epileptic attack disorder’ misdiagnosis. At 14 I had my first noticeable ‘absence’ seizure. This landed me in hospital. I was then in hospital for a week having MRIs and CT scans and EEGS (which showed I was photosensitive). After still having seizures, they said I wasn’t epileptic so sent me home. For a year, I kept having tonic clonic seizures, absences and focal seizures. Finally, I was diagnosed with epilepsy. I was put on Lamotrigine and that worked well for 9 months. I had no tonic clonics and the other seizures were a lot less. Later on, more tests showed I needed Keppra (Levetiracetam)…. This one didn’t work well either… I felt sad and down- it just wasn’t working for me. So they put me on Eslicarbazepine and Clobazam, but that didn’t do a lot and the tonic clonics came back. So now I’m on Zonisamide and Lamotrigine and Clobazam… things aren’t perfect but I’m sure it will get there. To anyone who has read this, thank you, sorry it’s lengthy and complicated.
We all can do this together 💜