Elouise was diagnosed with epilepsy five years ago. She shares why epilepsy is more than seizures and the support that she has received which has helped her come to terms with her diagnosis.

Can you tell us about how you got diagnosed with epilepsy?

In 2017, I started to have convulsive seizures, but it took me months to see my GP because I did not think I would be believed.

In 2018, I saw my first Neurologist who said NEAD (Non-Epileptic Attack Disorder) and to try to reduce stress and he will see me again in a year.

I did what he said but things only continued. In 2019, I was diagnosed with epilepsy and put on my first medication.

How did you feel when you were first diagnosed with epilepsy?

I was relieved that I finally had answers and was listened to. I felt validated and I could finally work towards improving my health.

Knowing I had treatment options gave me hope but I was overwhelmed at the idea of being on medication for the rest of my life.

I was nervous about telling my family as they had never seen me have a seizure because I was living at university most of the year and I did not want to tell them until I had a name for it.

What type of seizures do you have? How does it affect you?

Focal aware seizures are my main type which can progress to bilateral tonic clonic seizures.

I am affected by the aftermath of them but also, I cannot do a lot of day-to-day tasks safely and I must risk assess all the time. I need to sleep a lot and must nap throughout the day.

What challenges have you faced since being diagnosed with epilepsy?

One of the biggest challenges was learning to accept and understand my diagnosis. It took months to dare Google epilepsy and learn first aid, I had never even gone to hospital until after my diagnosis.

Another is navigating the healthcare system, dealing with medical gaslighting, and fighting to advocate for myself at every appointment.

I often going into appointments scared of what they will say and if they will try to blame everything on mental health and dismiss me.

We always say that epilepsy is more than seizures. Do you feel this has been your experience?

Yes absolutely, often people assume you have a seizure then get up and everything is back to normal.

Seizures may be a big part of the condition, but it is not the only part. I deal with bad memory loss and recall, tremors, insomnia, vivid nightmares.

There is a constant worry about the next seizure, scared about the possibility of SUDEP (Sudden Unexpected Death in Epilepsy) and mentally trying to cope with it all.

Do you feel that epilepsy has stopped you doing what you want to do?

Yes, since I was diagnosed while at university, I really struggled to finish my degree and almost gave up many times.

I had aimed to work in the film/tv industry but even entry level roles often need you to be able to drive.

On that topic, I will never be able to drive and that limits where I can travel to. I have avoided socialising and going out alone because I worry about having a seizure and how people would react.

What kind of support have you received since being diagnosed with epilepsy?

I have had a lot of support from family and friends. Joanne at the Peter Doody Foundation has had a significant impact on me.

She got me an Embrace seizure detection watch; she has been there to support me, and I featured on her documentary about SUDEP which was released this year.

The online communities have been amazing especially on TikTok and Facebook. I was also recently supported by Epilepsy Scotland when facing medication issues.

What has helped you manage your epilepsy?

I track my seizures in a diary which helps me find triggers that I can then avoid.

Also, I have a Medical ID lanyard to wear in public. I work with my body not against it by listening to what I need like more sleep etc.

I have my Embrace watch that alerts chosen contacts when it detects me having a convulsive seizure which allows me to get the help I need.

What would you say to others who have been recently diagnosed with epilepsy?

It will feel overwhelming for a while, but you are not alone. Please reach out to online groups and epilepsy charities for support. Research!

Learn about epilepsy, seizure first aid, your specific seizure types and how to advocate for yourself in appointments.

It is vital to know about SUDEP, how to reduce risks and as scary as that is, it is much better to know. Be aware of medication interactions such as pain medications, contraception.

Be strict with your medication schedule. Remember quality of life matters too and there are lots of treatment options to try.

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.