Newly diagnosed

Hi Ive newly been diagnosed with epilepsy. The diagnosis totally threw me. The EEG indicates I have partial epilepsy.

I had two brain operations last year and the partial epilepsy is in the area of damaged brain.

Initially the cons neurologist said she suspected simple partial seizures (before I was tested). At my diagnosis appt I gave her the suspected seizure diary where I had 876 seizures in July alone on top of the hallucinogenic seizures and she said I had complex partial seizures.

I dont get to see her again until Dec and i have lots of questions - like why do you think I have increased to Complex partial epilepsy.

I dont have/havent been told I can access an epilepsy nurse specialist. Is there anyone who's experienced in epilepsy tell me why the suspected seizures have jumped from simplle partial epilepsy to complex partial epilepsy?

I've told some members of my family and one close friend.

I dont want to tell anyone else as I was poorly educated about epilepsy and im well aware the risk of knowing my friends and healthcare colleagues are just as uneducated and ignorant as me.

My senior manager at work discriminated against me on 3 seperate occasions when the occupational health consultant told her i had suspected seizures.

Thank you in advance


5 Replies

  • I'm sorry I can't help with your problem, but do go and see your GP. I have petit mal and although I see a specialist, there have been times when I've needed advice from your GP. Do go and see him/her. No, they don't know everything in that field, but they might explain things to you. Hope you get on ok.

  • Thank you vizrodge :)

  • Hi,

    Having epilepsy from 5 it must be scary for you to suddenly being diagnosed. It's a very difficult condition to understand. My epilepsy changed from absences to full blown tonic clinic seizures so I completely understand and there was no reason for it. I found my epilepsy specialist nurse was very useful! The other place is have you tried looking at the epilepsy action website!

    They have a lot of information on their website.


  • Hi

    There is no epilepsy nurse in our area.

    I've rung epilepsy society and they've been great but can't be specific enough to answer questions about me or my epilepsy as they don't have the EEG info etc

    Thank you for your reply


  • They changed seizure listings- giving new terms to old seizures. More defined and specific. I experienced this and questioned the new terms. Helpful for insurance companies. Good luck in getting some answers.