Epilepsy Awareness
I haven't spoken about this in my blog before, but since November is National Epilepsy Awareness Month, I thought I would talk about it... The first three paragraphs introduce you to Epilepsy, and explains what it is. (Text in red and italics is not my work, references are at the end of this post.)
Like Cerebral Palsy, Epilepsy is an umbrella term for lots of seizure disorders. Epilepsy can be caused by brain trauma, although, this is not always the case.
Epilepsy is a condition that affects the brain. When someone has Epilepsy, it means they have a tendency to have Epileptic seizures.
Anyone can have a one-off seizure, but this doesn’t always mean they have Epilepsy. 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.
When I was diagnosed with Epilepsy, I was four. After diagnosing me, the doctor said that it was quite common for children with Cerebral Palsy to develop Epilepsy.
When I had my first Epileptic seizure, we were on a family holiday with the caravan in Yorkshire, in the middle of nowhere. It took the ambulance forty minutes to get to us, forty minutes to the nearest hospital, and I was fitting the whole time, I started to come out of the seizure when we arrived at the hospital.
Usually, I had Simple Partial (minor) seizures, which only lasted a couple of minutes, I was conscious throughout these, I could hear everything, but I could only really look, I couldn't talk until I was coming out of the seizure. Most of the time, I knew when I was going to have a seizure because I felt dizzy, my jaw would start to tremble, and a few seconds after that, I would lose my speech. I could get someone's attention by staring or making some sort of noise because I couldn't talk.
There were only about three times when I had a Grand Mal (major) seizure, I had to go to hospital when I had Grand Mal (major) seizures. When I had a Grand Mal seizure, I would lose consciousness and I don't think I knew that I was having a seizure until I regained consciousness.
I was on anti-convulsive medication, which helped to prevent seizures, the first type of medication I was on was called Sodium valproate (Epilim), we gradually increased the dosage, until I was having the maximum amount I could have due to my weight, but I kept having seizures, so the doctor put me on another medication called Levetiracetam (Keppra). The Keppra stopped me having seizures.
I can't remember when, but I had an EEG (electroencephalogram), this is a test that detects electrical activity in your brain using small, flat metal discs (electrodes) attached to your scalp. Your brain cells communicate via electrical impulses and are active all the time, even when you're asleep. This activity shows up as wavy lines on an EEG recording.
The EEG showed that the type of epilepsy I had was the type that most children grow out of, which I did. The only way to see if I had grown out of it was to take me off the medication, we thought it would be a straightforward process, but it wasn't. We were told that if I had a seizure, my electric wheelchair would be confiscated, so we argued the toss about this, and the "professionals" reached the conclusion that if a person had an "unexplained" seizure, then they would take their vehicle (which includes electric wheelchairs).
We started reducing my medication in 2012, the doctor gave me a prescription for the powerful drug, Buccal Midazolam. Midazolam belongs to a group of medicines called benzodiazepines, which are used to treat a number of different conditions, including seizures. If a seizure lasts for more than five minutes, it may be difficult to stop unless treatment is given.
The Buccal Midazolam is used to help bring someone out of a full-blown seizure. To administer this drug, you have to rub it into the person's buccal (side of the mouth). We weren't allowed to use it until we had been trained because it is a respiratory suppressant, and it was lucky we didn't because the dosage that was on the label was incorrect. The label said to give 5ml, but that would have killed me; I was only supposed to be given 1ml!
I have been seizure free since 2005.
Thank you for reading this post, and I hope this helped you learn more about Epilepsy.
The references I used to write this post are below:
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