Today is Epilepsy awareness day and I had the privilege of speaking with Stephanie on twitter about her experience with this chronic condition. She so kindly allowed me to post this blog in an effort to raise awareness about epilepsy and how it can affect your life.
According to Epilepsy Action;
“Epilepsy is usually only diagnosed if someone has had more than one seizure, and doctors think it is likely they could have more.
Epilepsy can start at any age and there are many different types. Some types of epilepsy last for a limited time and the person eventually stops having seizures. But for many people epilepsy is a life-long condition.”
It affects around 600,000 people in the UK alone, meaning that 1 in 10 people will suffer from epilepsy in their lifetime. Approximately 87 people are diagnosed in the UK every day.
For over half of those diagnosed the definitive cause of their epilepsy is unknown, but it can be caused by a stroke, a brain infection or a severe head injury, among other things.
Stephanie (@simplysteph_uk)
“I was first diagnosed with epilepsy in 2003 at the age of 16. The first indication I had that something might be wrong appeared when I began experiencing shaking and numbness in my feet, which then quickly spread upwards and into my brain. My mum immediately sent me to the Emergency where I was kept overnight for tests and observation.
During my stay in the hospital, I experience my second seizure in front of the emergency neurologist. Immediately and without hesitation, the neurologist diagnosed me with epilepsy and started me on a medication called Dilantin in a bid to help stabilize my condition. I was then discharged the next day and for the next fifteen years, the Dilantin would enable me to stay in remission.
In 2017 I relapsed from my epilepsy. During that time I was the victim of extreme bullying from my half cousins and the stress caused me to have a tonic-clonic seizure. As a result, my neurologist lowered my dose of Dilantin and prescribed an additional drug called Keppra.
Getting used to Keppra was a nightmare and while I was still adjusting to the medication I experienced a further two seizures. Keppra is a difficult drug to manage. If my blood level is high it means I’m close to overdosing and if the level is low, I’ll have another seizure. The margin of error is so small that it was hard to get right in the beginning and even now I am on the constant lookout to ensure I’m within the safety zone.
Right now on a daily basis, I have to be aware of my surroundings because I can have auras anytime and anywhere. Auras are a sense of feeling before an actual seizure. My auras are nausea, abnormal hearing sounds, and numbness in my hands/or feet.
Having to take two medications for the rest of my life (Dilantin and Keppra) is a hassle because I have to keep my dosage at a stable level because the margin for error is so small. Every 6 months my doctor will take a blood test to ensure that everything is running smoothly.
Occasionally I’ll have a small seizure called a focal seizure. A focal seizure is a seizure which is contained to only one part of the body, and for me, that tends to be my head and shoulders. These seizures only last for about 10 seconds but they can easily spread to the other side of the brain which would trigger a full on tonic-clonic.
Alongside the life long use of medication, I also need to keep my stress levels low on a daily basis in order to cope with my epilepsy symptoms. I’ve managed to do this by practicing yoga for 1 hour each day.
I wanted to write this blog post for you all to tell you that people should not exclude others with chronic illnesses. We are all human beings and want to be as much a part of society as everyone else. Accept others that are different because we can learn from each other and spread the awareness of epilepsy.”
Please take the time to read Stephanie’s post on her own blog.
Living with epilepsy can mean many different things for many different people. Epilepsy Action provides many stories about how epilepsy impacts daily life.
If you or anyone else is affected by the issues discussed in this post you can visit the following;
Purple Day
Epilepsy Society (UK)
A number of weeks ago I called to action asking fellow bloggers to share their stories with me as part of a collaboration train. I didn’t expect any responses let alone the amount of interest I received, and I am truly grateful that so many of my followers are willing to share their stories and talent with me.
If you have a story you would like to share in regards to mental health, self-care, wellness, chronic illness etc please get in contact with me via Twitter or using the contact form in the main menu.
Thanks to Stephanie for sharing her story. It’s amazing how everyone’s epilepsy differs – especially when in TV and film you only ever see the “normal” type of seizure. I certainly didn’t know there were so many different types of epilepsy / seizures so posts like these have definitely been a learning experience for me.
Thank you for sharing. My brother had a fit when he was playing an arcade game and he has to avoid flashing lights but he was never put on any medication as it seemed an isolated incident. I did have a friend who had epilepsy, she used to be totally unaware of where she was and would just kind of zone out & shake. Until then I just thought epilepsy was the same for everyone.
I first came across epilepsy with a guy in work. Until then I thought it was all fitting and that was it, but from researching this post and from speaking with Stephanie I realize there is so much more to it.
That’s why we need these sorts of posts and awareness days so we can educate ourselves.
Thanks to Stephanie for sharing her story. It’s amazing how everyone’s epilepsy differs – especially when in TV and film you only ever see the “normal” type of seizure. I certainly didn’t know there were so many different types of epilepsy / seizures so posts like these have definitely been a learning experience for me.
Jenny
http://www.jennyinneverland.com
I certainly had no clue that there were so many different types until I did my research. It can really impact on your life.
Thank you for reading Jenny <3
Thank you for sharing. My brother had a fit when he was playing an arcade game and he has to avoid flashing lights but he was never put on any medication as it seemed an isolated incident. I did have a friend who had epilepsy, she used to be totally unaware of where she was and would just kind of zone out & shake. Until then I just thought epilepsy was the same for everyone.
Sarah 🌺 || Boxnip
I first came across epilepsy with a guy in work. Until then I thought it was all fitting and that was it, but from researching this post and from speaking with Stephanie I realize there is so much more to it.
That’s why we need these sorts of posts and awareness days so we can educate ourselves.
Thank you for reading this 🙂
What an interesting read, I’m so pleased she shared her story, I think more posts like this help spread awareness and support for others too
Thank you for taking the time to read and comment 🙂
Great post, thanks for letting me know more about Epilepsy!
You’re very welcome 🙂