Yesterday I wrote a blog post explaining and informing you about International Purlple Day, at the end of that post I told you I would be sharing my purple day photos and my Epilepsy Story in the hope of creating some awareness.
Here I am wearing purple.
When I was fourteen I was diagnosed with epilepsy, I had several seizures before my diagnoses of Juvenile Myoclonic Epilepsy, which is typically generalized throughout the brain.
I was having the typical symptoms of JME (arms flinching, legs buckling.. soon after I woke up in the morning) for several months before my grand mal, but no one knew what it was so we just ignored them because they didn’t seem to cause me trouble after 30-45 minutes from waking up in the morning.
My fist grand mal seizure that I recall was whilst I was camping with a friend, I remember waking early morning and my arms jerking and the next thing I knew I woke up all hot and breathing heavy, my friend mentioned It to me but nothing else came of it.
The ‘flinches’ as I call them continued the first thing in the morning most days and one day I awoke early and the flinches were really bad, I just thought I was tired to I went to the bathroom to splash my face with water where I was discovered moments later by my brother, I had hit the floor with a thud and woken him. I had a few more grand mal seizures before I was diagnosed and put on medication called Epilim.
Coming to terms with my Epilepsy wasn’t easy, partly because I didn’t know much about the condition. I didn’t want people to know that I had epilepsy as I was scared of what their reaction would be. My epilepsy was controlled with my medication so I was able to live a fairly normal life until 2002 when the seizures started again. This time they were more frequent and lead to more embarrassing situations. To name just a few I was on a tube in London during Notting Hill carnival so it was packed, one moment I was sat down the next I wake up on the floor to a paramedic, I was mortified but luckily sustained no injury, another occurrence was the morning of my friends hen do, I had a seizure at home and wacked myself on the table and gave myself a lovely black eye. That night people asked about it and I jokingly said you should see the state of the other person, I was embarrassed and worried what people would say and how they would react.
My neurologist sent me for an electroencephalogram, or EEG, which checks your brainwaves. An EEG, if anyone ever offers you one, is dozens of wires attached to your skull with conductive wet clay. The wires pick up the electrical patterns in your brain while a light is flashed at you. Having a light flashing at you for ten to twenty times a second is a form of mild torture and as for the clay, that takes forever to get out of your hair! When I went for the results he simply said things seem a little worse and decided to put my medication up, this seemed to work for a while but I was still getting the flinches which made mornings at University hard work.
Later on in life I got married and we decided we would like to try for a baby, so off to the neurologist who explained that Epilim was not a good medication to be on due to high risks of birth defects so I was put on to a drug called Lamotrogine, this has proved great at controlling my grand mal seizures but not my myoclonic jerks (flinches).
I was explained all the risks of pregnancy as someone with epilepsy, the high risk of low birth rate and more scary the high risk of a child being born with spina bifida and how it can be harder to conceive due to medications. We still went ahead with trying for a baby and once I was pregnant there was a mixture of excitement and worry. Most people get to enjoy their pregnancy but I didn’t until after the twenty week scan when we were advised that baby was growing ok and there was no sign of any neural tube birth defects.
Due to my epilepsy I had to do things a little different with looking after my baby, I was advised to sit on the floor when feeding particularly when tired so there was less chance of falling on the baby. E is now three and the only time we have had a problem is when I was really flinchy and I dropped her on her head! Luckily she was ok and I was told that they are very resilient and they see more babies with burns more severe. Even so it was a scary event to encounter and I have been super careful since.
My epilepsy is triggered by alcohol, so I only have a drink occasionally, tiredness and stress. Not a great combination when you have a child and a husband who is in the Royal Marines and away a lot. I have coped well with E but I am not sure it is something I would want to go through again, I value my sleep too much. Although the chance of another grand mal is small thanks to my medications, I still have the thought in the back of my mind that I could have one in public and people and even worse E would have to witness it as she doesn’t completely understand. She will say on the mornings I am flinchy that mummy is tired that’s why she is flinchy, on those mornings she is really good and lets me rest.
There is a possibility of trying another medication that will hopefully control the flinches but I am scared that I might have the horrible experience of having Grand Mal seizures again.
This is the first time I have told my story, I accept that my epilepsy is part of me and I am fine with that but the biggest inconvenience of my disability is that I am not allowed to drive, this makes simple things harder work, especially with a three-year old. It has also meant that I have struggled with getting a job due to location problems and public transport in Exmouth isn’t great.
The other thing that I find hard to deal with at times is that some people don’t understand the seriousness of the condition, I know of a couple of people who don’t think I should be so open about my epilepsy due to people’s reactions but I think by letting people know how epilepsy can affect a person’s life is important and creates awareness.
If someone has a seizure, it is physically impossible for them to swallow their tongue. Don’t put your hand in my mouth, because I’ll bite it. Just cushion my head and let me get on with it, only call an ambulance if it lasts more than a couple of minuets or if I have injured myself.
All I have to say is look after yourself, don’t drink too much, don’t do drugs and get plenty of rest and watch out for stress as it can be a killer. Be kind to your brain as you only have one. One in 100 people will have a seizure at some point in their life so look after yourself.
This is my story, I have Epilepsy and I am not ashamed or afraid.