Epilepsy Awareness feature

Epilepsy Awareness – My Story

Today is International Purple Day – which is all about spreading awareness of Epilepsy. Today I thought I would share my story.

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. Arm’s flinching, legs buckling, soon after I woke up in the morning. This went on for several months before my grand mal. However 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. 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. After a few more grand mal seizures, 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. 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. 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. He 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. I went to see the neurologist who explained that Epilim was not a good medication to be on due to high risks of birth defects. I was put on to a drug called Lamotrogine. This 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 the high risk of a child being born with spina bifida. I was also told that it can be harder to conceive due to medications. We still went ahead with trying for a baby. 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. We were advised that baby was growing ok and there was no sign of any neural tube birth defects. I was relived.

Due to my epilepsy I had to do things a little different with looking after my baby. I had to sit on the floor when feeding particularly when tired. This is so there was less chance of me falling on the baby. E is now six 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. 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 two children and a husband who is in the Royal Marines and away a lot. I have coped well with E but I wasn’t sure it is something I would want to go through again. I value my sleep too much. The chance of another grand mal is small, thanks to my medications. However I still have the thought that I could have one in public. People and even worse the children would have to witness it as they  completely understand. E will say on the mornings I am flinchy that mummy is tired. On those mornings she is really good and lets me rest.

Several years later we decided to have another baby. The pregnancy was a lot harder than the first. I was constantly tired. My epilepsy was under control, thankfully. When J came a long everything was fine to start with. He wasn’t a great sleeper so I struggled with my Epilepsy. My myoclonic jerks made things hard work. But I coped. However there has been an incident when I dropped him. He was two at the time, one minuet I was cuddling him and the next he was on the floor. He fell on his foot, as a result he struggled to walk. The rest of that morning was spent at the hospital. The x-rays came back,  they showed no that no bones were broken. They said it was just a strain.

It’s incidents like dropping the children that upset me the most. I certainly never forget them. It is mum guilt on a whole different level.

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. However the biggest inconvenience of my disability is that I am not allowed to drive. This can make simple things harder work, especially with a six and two-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. I know of a couple of people who don’t think I should be so open about my epilepsy, however I think by letting people know how epilepsy can affect a person’s life is important. It helps to creates epilepsy 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. I hope this post helps share epilepsy awareness.

Here is a little infographic on what to when someone has a seizure.

Epilepsy Awareness

For more epilepsy awareness take a look at the Epilepsy Fact and Fiction post.

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1 thought on “Epilepsy Awareness – My Story

  1. You are such a super momma! I doubt highly I’d manage well with half the things you manage. I don’t do well with stress at all! You are right though, we need to look after ourselves, if anything all your posts have made me a lot more aware of the signs and hope that it helps others to normalise hidden disabilities and remove this taboo-ness (? Ha!) that is attached to them x

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