My epilepsy story: Ragen

Ragen shares his experiences of being diagnosed with epilepsy and the challenges she has faced.


How did you feel when you first knew you had epilepsy?

It took a long time (two years) to get the diagnosis and once the official diagnosis was epilepsy my whole life was affected negatively in so many different ways.


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

Tonic-clonic. I have no short-term memory and have to document what I do day to day.

My tongue is graphically destroyed and I am missing taste buds. I have broken several teeth.

My muscles are so tight and on “alert” 24/7. I have insomnia horribly because 90% of my seizures occur in my sleep.

The loss of memory is traumatic and devastating financially, emotionally, and physically.


What challenges have you faced since being diagnosed with epilepsy?

Bankruptcy. Loss of five well-paying jobs due to discrimination. Horrible loss of memory!


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

It is most certainly more than just seizures! I have documented proof that I have seizures almost every year within the same week or month or sometimes only days apart from past seizures like they are scheduled in my brain somewhere!


What has helped you manage your epilepsy?

Nothing so far. I have had two brain surgeries and have an RNS device that still is not stopping them mainly because Montana did not have a qualified Neurologist until I recently recruited one for myself!

The implant has been able to keep me out of the ER as often.


What are your main seizure triggers and how do you manage them?

Stress, aura’s, memories, illness, medications, and flu/covid injections caused them last year.


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

Keep fighting, keep informed, and force your providers to be proactive.

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.