My Life with
Seizures
Booklet design by Gabriel Heidler
Hi, I’m PHOEBE I’m 24 years old. This is my story. I have Epilepsy, so I’ve created this booklet with the help of Fixers - the charity that gives young people a voice - in order to explain a little bit about the various effects of the condition, and to let sufferers know that there are other people out there with the same condition. My symptoms often differ from what the information out there says; my seizures last longer and I become more confused which was scary at first, but many people will have different experiences. It’s alright for people to be a little scared when they’re first diagnosed, but hopefully my booklet can help put their minds at ease. Thanks!
I have complex focal seizures, known as absense seizures. This means that I sort of zone out, becoming unaware of what’s going on around me, and then I can’t remember what’s happened once the seizure has finished. For example, I could be in a shop and then suddenly I find myself outside without any memory of what happened. Annoying huh? That is what it’s like for me. Frontal Lobe responsible for decision making, problem solving, emotion, and consciousness.
The symptoms of epilepsy
Parietal Lob for languag and proces (touch, tast smelling).
Temporal Lobe responsible for hear speech, memory, emotion, and learnin
can vary depending on the area of the brain that is affected. This brain map shows which areas do what.
As I suffer with Focal (absence) Seizures, that means a small part of the brain is affected, compared to Generalised Seizures which affect most or all of the brain. My absences cause me to lose awareness of where I am. When this happens I stare into space, rub my hands, and look as if I’m chewing but have no memory of it when I come around.
My Epilepsy was diagnosed with an Electroencephalogram - an EEG. An EEG measures electrical activity in your brain by sticking small sensors on your scalp, in order to find unsual brain activity.
During the test, you’ll be asked to rest quietly and open or close your eyes from time to time. In most cases, you’ll also be asked to breathe in and out deeply (known as hyperventilation) for a few minutes. At the end of the procedure a flashing be - responsible light may be placed nearby to see if this affects your ge, writing, brain activity.
ssing the senses te, sight, hearing,
Occipital Lobe - processes information related to vision.
ring,
ng.
Cerebellum - helps with balance and coordination
Unfortunately in many cases of epilepsy, no cause can be found. This can make it pretty scary when no one knows why it’s happening.
Information from NHS and Epilepsy Action
I was diagnosed when I was about 17. It shocked me and definitely made me very upset at first. I was having so many seizures before I was prescribed medication and didn’t understand why they were happening. At this point I didn’t even know anything about epilepsy!
After my EEG I knew a bit more and
realised that it wasn’t as scary as I thought it would be, but if I had known more about epilepsy, I think I would have felt a bit more at ease.
It was confusing at first because I had
never heard of my type of epilepsy.
Over the years I have tried a few different medications and had side effects from some, so we had to try others. I’m finally on two different types now that my body agrees with and the side effects are gone.
If I’m at work my epilepsy can make me
stressed and stops me from focusing. It can also make me very tired. Luckily everyone at work and my friends understand and know when I’m having a seizure
so they know what to do. Find other people with epilepsy you can talk to, find out as much information as you can, and make sure you find the right medication. Most of all, stay safe! Keep this card in your purse or wallet so that others can know what to do if you have a seizure.
For more info on living, travelling, and being social with epilepsy check out: www.epilepsy.org.uk/info/living-with-epilepsy www.epilepsysociety.org.uk/living-epilepsy
FixersUK
fixers.org.uk
Fixers is a campaign that helps young people ‘use their past to fix the future’ and is partfunded by the National Lottery through the Big Lottery Fund.
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