Back in control with epihunter

Posted by Hogne Ulla on 23-Nov-2018 12:45:36

Epihunter is used by children, young people, and adults. In this interview, we meet Philippe (52) from Antwerp, Belgium. He has been using epihunter for some time and shares his story with us - from his first seizure to his new daily approach and the lessons of his epilepsy.

Interview with Philippe (52)

When were you first affected by epilepsy?

I was a very self-confident and dynamic entrepreneur. Everything was going well, I had the world at my feet. In November 2012 everything suddenly changed. I had just returned from holiday and was unexpectedly struck by a severe epileptic seizure. I remember it vaguely: one moment I was reading a book, the next I was lying on the floor. What had happened in the meantime completely escaped me. It took six hours before I came back to myself and heard what happened to me.

Did this seizure impact your daily life?

The seizure itself was sudden and short-lived, but that does not apply to the impact of it at all. Nothing is what it was. My life changed completely. A year-long driving ban, daily appointments with the medicine cabinet, living with a curfew, avoiding citrus fruits and flavour enhancers, and staying away from alcohol, caffeine, and kinin-rich drinks. Flashing lights triggering seizures. The list goes on. In short, I lead a very strict and structured life today. I simply have to.

Man looking over the sea

Do you still experience seizures? Do you also have absences?

Until now, it had just been that one, heavy seizure, after which I was diagnosed with complex partial epilepsy. Absence seizures occur regularly. When I have an absence I suddenly lose my consciousness, I start to talk weirdly, see crazy things, and my mouth makes bizarre movements and smacking noises. I don’t remember anything afterwards. That is the hardest part.

What are the biggest challenges in dealing with absence seizures?

Absence seizures are not only difficult, they are very dangerous too. Especially when you are alone, as I often am. I am divorced and see my children every two weeks, meaning that every other week I live alone. That week I never know if I have had an absence or not. When the neurologist asks me if I have had any seizures since my last visit, I can never give him an answer with 100% certainty. When I’m on my own, I am constantly in fear that new seizures will occur.

How did you get in touch with epihunter and how do you use it?

I got to know epihunter through the Epilepsy League here in Flanders. Epihunter has changed a lot in my life - for the better. The epihunter solution, consisting of an EEG headset, a mobile app, and a web portal, tracks absence seizures, meaning I’m able to find out on the app or the portal when I’ve had a seizure, and see any increase or decrease in seizure activity. That has important advantages.

Thanks to epihunter I now live my life feeling more relaxed and have better and more meaningful contact with my neurologist; if the neurologist asks me today if I still have a lot of seizures, I can give him exact information. I also have a better view of the circumstances and other things that provoke my absences. That takes a good deal away from my fear and anxiety. If I know if and when I had a seizure, I can check for possible triggers such as bad sleep and stress.

With epihunter, I adjust my lifestyle and eating pattern to live a better life with better-managed epilepsy. Using it on a daily basis provides me with new insights, which in turn help me to better understand my epilepsy. And even better: I can go back to work again. A big “thank you” to the epihunter team!


Do you have a story to share?

Get in touch with us to share your stories from the life with epilepsy. No need to worry, you can be as anonymous as you want! Thanks to Philippe and all the others sharing their experiences so far.

Topics: absence, testimonials, seizure, uncertainty, unpredictable, neurologist, diagnosis, self-care, self-awareness, living with epilepsy, epihunter, apps