My Epilepsy Journey..So Far x

There are 40 different types of Epileptic Seizures “We don’t all just drop to the floor and shake” How many could you name? The scary part is, if you did not know me really well; you would have NO idea I was having a seizure.

I have temporal onset seizures and it took me 10 years to get my diagnosis. Read on below to find out more about my journey with getting a diagnosis and comment if you have experienced similar. Chloe x

I was around 12/13 when my seizures first started. Right as I was beginning my GCSE’s and I also had a lot going on at home. I was in and out of doctors at least once a fortnight and I missed a lot of school during my crucial years. The “diagnosis” went from panic attacks to hormones to seizures. One doctor even said I had thrush and that was causing it. Side note - I did not.

This went back and forth for 6 years before I finally got a referral to a neurologist.

The tipping point was around my 21st birthday and I was bound to my mums sofa for 2 weeks. It wasn’t safe for me to be at my own house alone because I was having multiple seizures a day. I was too scared to leave the house, even going to get a glass of water or use the toilet was terrifying with the fear of having another seizure.

We could not take it anymore and my nan took me back to the GP and it was a BATTLE. The doctor I saw could not be anymore rude and dismissive, he said and I will never forget “I will put my job on it that these are just panic attacks” however, reluctantly due to the fact that my nan was not moving he put in my neurology referral.

It took a while but when I finally got my appointment we were relieved. Finally we were at this point and we were going to get answers. Oh how we were wrong! But I had my EEG and we went away hoping that finally we had got here. Note - EEG’s are very painful when you have thick curly hair!

2 YEARS LATER!! I finally got another letter back from the hospital for my follow up from the neurologist. This time I saw someone new and credit where it is due she was great.

My original EEG showed I had slow transient waves on my right temporal lobe, so she booked me in for a sleep deprived EEG and an MRI.

January 2019 I finally got my diagnosis.

Today, my seizures are a lot more controlled, they are less frequent a lot less severe.

We are now continuing our fertility journey and I am under a new neurologist and a fantastic epilepsy midwife.

Stay tuned for further updates and join the conversation to talk more openly and make people more aware of Epilepsy.

This is our journey x