Today my guest blogger is Katheryn, a wonderful lady from over the pond (in England), you may know her as @crystaljigsaw on twitter or from her Crystal Jigsaw blog. Katheryn’s first seizure, which just happened to be in the water, is my worst nightmare and something I worry about for Meg all the time because we live in Florida. However, while a little scary, I also think her story is full of inspiration! Katheryn is wife to a farmer, fabulous mother to a talented little pianist diagnosed with autism, an amazing writer and it just so happens she also lives with epilepsy. Thank you Crystal for sharing your story and helping spread the word about Epilepsy!
In November 1998 I had a seizure whilst swimming in the Red Sea. It was probably the scariest thing that had ever happened to me up to that day and it changed the rest of my life forever. In May 1999, just weeks before I discovered I was pregnant with my daughter, Amy, I experienced two seizures in the same day and was then admitted to Bolton Hospital where I was diagnosed with epilepsy. Unfortunately, a diagnosis of epilepsy cannot be confirmed by one seizure alone due to the fact that a number of incidences can bring on a seizure; for example, excess alcohol, low blood sugar, lack of food intake, stress, exhaustion, to name but a few.
I was scared. I knew that I had to change my lifestyle and knew that at almost 30 years old it was time I grew up and faced the fact that I was indeed a mortal human being and not the perpetual woman I so wished to be. When I realised I was pregnant it was suggested that I begin taking Tegretol Retard, a slow release anti-convulsant drug which would, in effect, lessen the seizures and hopefully keep them under control. For ten years it worked. And then in November 2009, I once more found myself in hospital after suffering a tonic clonic seizure (previously known as a grand mal seizure).
My world was turned upside down. My daughter, now ten years old, was diagnosed with autism in October 2003 and I spent a long time blaming my own health for her condition. It has been reported that there is a fine link between autism and epilepsy, and it is not uncommon for a child with autism to develop epilepsy during adolescence. It was like having to come to terms with her autism all over again, when my epilepsy was once more thrown into turmoil. But it seemed that my own diagnosis wasn’t quite so straight forward when the next seven months saw me having more tonic clonic seizures, all a few days after the end of menstruation. Once more I altered my lifestyle, cutting out alcohol, caffeine and chocolate. Having finished writing a book last year I decided to switch off the computer and hang up the manuscript. Then in July of this year, realising the situation wasn’t getting any better even though my doctor had increased my medication significantly, I decided enough was enough and went to see a consultant privately. Within seven days of that initial appointment I had been given an MRI scan and an ECG. The MRI scan thankfully showed that I was normal. After worrying that I had a brain tumour I can assure you that the relief I felt was enormous. The ECG however, gave indications that my epilepsy was in fact photo-sensitive and according to the consultant, I had been taking the wrong medication for the past ten years.
He quickly began the process of changing this by prescribing Keppra, first in small doses whilst I decreased the Tegretol. It took four months for the weaning on/off process and I am now taking 2,000mg of Keppra per day having recently stopped taking Tegretol completely. I also resumed work on my book and having recently finished it, I am going through the editing process with a professional editor. I limit my time on the computer each day and wear sun glasses when using it at all times, and I hardly ever go outside without sun glasses on, even if it’s a dull day.
Epilepsy is a frightening condition. It causes a person to forget their surroundings, and in my case there was an incident at the beginning of this year when I didn’t even know my daughter’s name. For her it has been a difficult time as she witnessed me having a few seizures, but her love and understanding has given me a new lease of life. Unable to drive until my doctor is satisfied with my safe wellbeing, I can’t take Amy to places. Where we live in rural Northumberland it is particularly far away from all amenities and this is something I have found hardest. Having my independence taken away from me has been a terrible strain after living most of my life relying on me to get through.
I take each day as it comes now. I feel okay but I will never be complacent about my life; I cherish each day, not as if it was my last, but as if it is the beginning of the rest of my life. I have been given a second chance at living my life, albeit under the cloud of epilepsy. Even though it has warranted me making decisions I would have chosen to avoid, I will treat it with respect. And hope it will respect me in return.
3 thoughts on “Living A Life With Epilepsy”
That’s really informative, a great post. I remember kids at school taking seizures whilst playing computer games. My cousin had a few seizures whilst at uni but was not diagnosed with epilepsy, and it seemed to calm down.
It must be frustrating to be unable to drive, for both you and your daughter. Especially living on a farm!
I hope the Keppra stabilises things, from what I have read (and from what I have seen) it certainly seems to control seizure activity.
I don’t know if I told you Katheryn, but Meg doesn’t go anywhere without her sunglasses! The sun in Florida is very bright and sometimes bothers her, so we always air on the side of caution and take them with us. Meg also just recently started taking piano lessons! 🙂 x