Purple Day: Epilepsy, Out of the blue

By Sarah Carson   @Sazzle262    Sazzle's blog

I was diagnosed with Epilepsy at 8 years old. I had no warning whatsoever and the seizures came out of the blue. One Sunday morning out of the blue my family had to witness me suffering a cluster of grand mal seizures that lasted 2 minutes per seizure. Unfortunately I suffered memory loss and remember the last comment before going into the seizure and the first memories of me coming out of one. As a result of having six seizures at one go I had paralysis down my left hand side that lasted approx 24 hours and was in hospital for a couple of weeks. 

Whilst in hospital medical practitioners ran tests on me; those included an EEG and a brain scan that revealed that I had borderline Epilepsy with a build-up of electricity on the left lobe of my brain. After numerous conversations with my family and neurologist I was told that Anti Epileptic drugs would be the way forward. I was advised that I could possibly grow out of my condition. 

The overwhelming sense of disappointment when I was diagnosed manifested into constant worry. It got to the point where I hid behind my condition till I went to Therapy a couple of years ago. People don't fully appreciate the concerns you have when you suffer from Epilepsy. Basic tasks such as making a cup of tea, ironing, and bathing alone cannot be done unaccompanied. As I have no warning signs there is always the possibility that should a shaking episode/fit occur then the end result could be disastrous. 

The first medication I was put on was Epilim at a low dosage of approx 200mg. This was the only medication I would remain on till I was 14 and came off medication entirely. My seizures were sporadic and with no warning I was on guard regularly. My confidence was the worst effected as I was unaware as to when and where a seizure would occur. The fear inside of me was overwhelming and I felt that no one fully understood me. My worry was that all my family and friends would treat me differently.

Fortunately my family have given me their undying support and have provided me with the stability I needed and encouraged me to do socialise as normal with children of my own age however to ensure that I was careful and took my medication regularly. When I was 17 years old my seizures returned frequently till I was 21 and remained till I was 23 years old. Like the previous pattern no warning signs were given, the medication however was altered and I went onto 200mg of Lamotrigine and 3000mg of Keppra. Since January 2009 I have been seizure free for just over four years however have remained on 1500mg of Keppra only. 

As a result of my Epilepsy I questioned my own abilities and worried constantly about my condition as I was not only worrying about my seizures however had the stress of coping with shaking episodes that my consultants believed could have started as a result of my increase in medication. 

After dealing with my Epilepsy for over 16 years I consulted neurology and was given the opportunity to trial Cognitive Behavioural therapy (CBT) that changed my entire thought process. CBT is something I would recommend to all on the basis they commit to the services offered. Slowly but surely I am in the process of getting better and are now in a position to understand my condition fully. 

I have been given the opportunity to seek additional advice through support networks and since creating my blog in January 2012 to raise awareness on Twitter I have had the pleasure of liaising with people like me who experience similar issues. 

Epilepsy is a condition that in my case wasn't hereditary. It was something that I personally believe I was born with however didn't surface till I was a small child. Doctors believe that the cause of my Epilepsy could be stress therefore I try my utmost to not put myself in stressful situations and try to maintain a positive outlook at all times. As hard as it may be channelling your frustration into exercise and hobbies is the best stress reliever and by extension can have a feeling towards your condition. 

My one word of encouragement is to focus on you and take one step as it comes. Never feel like you're alone as there is always someone to help. x

No comments:

Post a Comment