Lex & cluster seizures

  • February 15, 2024
  • 3
In this article

Meet Lex from Norfolk in the United Kingdom. She is currently studying criminology, psychology and law with the distance learning center.

When did your epilepsy journey begin? 

For me, my health has never quite been 100% but my seizures didn’t begin until shortly after my 17th birthday. I remember I was already having some health concerns with fainting and then I got an aura. I just assumed that I was just going to faint again.

At the time I was in college, and I had to excuse myself from the lesson and went to the bathroom, I didn’t make it all the way before realizing thatI needed to get on the floor. I remember messaging my now fiancée (girlfriend at the time) and another friend, but then nothing until I came back around. Laying on the floor above a staircase in my cadet uniform I opened my eyes to see our two first aiders, our deputy headteacher, and my girlfriend all standing around me. 

I don’t remember much from when I came around other than being told by the first aiders that they were concerned I had had a seizure. As soon as I came around enough, I went about my day normally and didn’t think anything more of it until it happened again, and again, and again. To the point I was having up to 16 seizures per day, lasting up to 40/45 minutes individually with clusters of seizures lasting up to two hours.

Read more: seizures vs fainting - the differences and similarities 

What type of epilepsy do you experience?

My epilepsy is caused by a benign brain abnormality to my hippocampus, though we don’t know what caused the abnormality. I experience tonic-clonic seizures, absence seizures and myoclonic jerk seizures.  

What has your experience with doctors been like?

My experience with doctors has been varying. My neurologist fails to listen to us a lot of the time and though my general practitioner doesn’t appear to have a lot of knowledge on seizure triggers he generally does listen to me and my partner, and tries to help. Learn more: How to find doctors who specialize in epilepsy

Tell us about what support you have

In terms of support, I have always had my partner since the beginning, she has been there for me every step of the way. Additionally, I have some online friends who are part of the epilepsy community who are so understanding and kind and supportive, but overall, my partner is the one who has been my rock, even when I felt I had no-one

Experience with Epsy

I found out about Epsy on social media, after I was first diagnosed in July 2022 I felt alone and that I wouldn’t be able to live my life, as any teenager would do, I turned to social media. I was trying to find any accounts that mentioned epilepsy to find a way to carry on living and one of the accounts I came across was Epsy. I was instantly intrigued and therefore followed and began scrolling. Epsy allows us some level of independence back, it allows us some freedom and some responsibility, and I think any person just beginning their epilepsy journey would greatly benefit from the support of Epsy.

You can follow @EpsyHealth on Instagram, Facebook and X. 

Message to others with epilepsy

To anyone newly diagnosed I say you must keep going and you have to stay positive and keep your head up. If you allow it to, epilepsy can isolate you and make you lonely and fearful, but it can also introduce you to a whole new community of people all striving for one thing. It can create incredible friendships and bonds, and you need to give things a chance. 

Not every medication, diet or surgery you try will work but something will, you just need to give it a chance and advocate for yourself. And don’t be afraid to use aids if you need them. I put off using my crutches, braces and wheelchair for over a year and in the long run people really don’t care, anyone giving you looks or staring needs to be educated but you’re never going to see them again, you need to learn to put yourself first sometimes, it's not selfish, it’s human.

I’ll leave you with this, in the words of Jazz Thornton ‘stop surviving and start fighting’.

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