I think the majority or people would still say that epileptic seizures are the same. However, this is another myth that surrounds epilepsy and one that still needs to be addressed.
There are in fact around 40 different types of seizures and each person with epilepsy may encounter one or a combination of different types. A seizure happens when there is a sudden electrical burst of activity and this activity causes a temporary disruption to the way the normal circuits of the brain work. These circuits can become mixed up and the temporary disruption to the brains activities causes the person to have a seizure.
Now this is when the majority of people that have never encountered epilepsy would think that all seizures are the same and the most familiar being a tonic-clonic seizure where the person would go stiff, lose consciousness and may convulse where ever they have fallen. In reality there are so many different types of seizures, no two people will experience the same type of seizure and therefore seizures become unique to the person.
The signs of a seizure are not always easy to spot. Some people may just appear to be day dreaming, or look like they are chewing on something. They may also have difficulty in speaking and making their speech understandable, they may slur or be unable to form the necessary words.
Seizures don’t always happen during the day, Nocturnal epilepsy is when the seizure would happen during the course of the sleeping night and our daughter developed this type when she was 13 just after the onset of puberty.
We didn’t realize at first that she was having a seizure as they would happen about midnight and we thought she was just having a nightmare. There were no classic tonic-clonic symptoms and after a short while, she would settle back to sleep. However this all changed about 2 years later as the nightmares became more severe and it was noticeable that she wasn’t just dreaming.
I shall always remember that night and the eerie scream that she let out. This was Olivia’s first tonic-clonic seizure and oh boy we didn’t know what had hit us, we were not prepared for what we encountered or how to deal with it. I ran as fast as I could to her bedroom, it was just after 3am and I found Olivia wedged up against the wall, stiff as a board, eyes wide and rolled back and not a breath from her body, I thought she had died. I wouldn’t let my husband see her face, he was flapping about as it was and this would have made him worse.
I had to take charge of the situation, not that I had had any training or knew what to do but a motherly instinct kicks in and you go into auto-pilot. I didn’t try to move her or try and open her mouth but I knew something wasn’t right so dialled 999 for assistance. At this point I directed my husband to the front door to be on ambulance watch, this left me to carry on talking to Olivia, reassuring her if she could hear me, that mummy was still there. I kept my hands on her all the time to see if I could feel a change in the tension in her muscles, it took 12 minutes for her to come out of the tonic-clonic stage but she was still unconscious.
Olivia was unconscious for a total of 30 minutes and after some oxygen she started to come round, sit up and start to recognize her surroundings. The relief for my husband & I was immense, we thought at one stage we had lost our baby girl and the out pouring of emotion had started. Shortly after Olivia had recovered she returned to sleep and didn’t leave her bed for 12 hours after.
From that day, her seizures became more regular and always around the same time of night. It wasn’t long after that we sought medication for her and Sodium Valproate was prescribed. After a reducing dosage for the last three years, Olivia has managed to eradicate the morning dose and just has the epilepsy medication at night. Despite her having learning difficulties we have been lucky that the medication has not caused any side effects and she has settled onto it with ease.
Olivia now calls her seizure ‘bad dreams’ and is starting to recognize the sensations of starting a seizure and by the time she has called out to me ‘mummy I can’t get to sleep’ despite her being asleep and the time is after 1am, I have now managed to get to her on a few occasions to stop her going into the seizure any further, by distracting her attention. We now have a baby monitor in our bedroom so we can see her movements and her breathing and this alerts us to the early onset of a seizure.
We were told when Olivia was a baby that her brain was producing more electrical impulses than normal and she may go on to develop epilepsy she may not, so it ended up as a waiting game. I suppose as parents we never wanted that night to come, it has to be one of the worst days of our lives. Not because of the impact on us, that’s the easy part, but because the impact is has on Olivia’s life and the stigma’s that still surround epilepsy.
We have found over the years the difficulty in obtaining a hotel room that will accommodate all three of us, as she cannot be left on her own. Most hotels will not allow a child over 16 to share the same room and despite explaining about her medical condition they are unable to assist us.
A certain high street store that sells girls accessories refused point blank to pierce her ears because she had epilepsy and despite explaining it was nocturnal epilepsy, they were not prepared to pierce her ears without a doctors letter to say she was fit & well.
Luckily Olivia has accepted her epilepsy and embraced it and is quite happy to discuss it and strangely appears to be proud to have it. However she is very aware of what happens to her and does find it upsetting when she has bitten her mouth to shreds or has bruises from falling.
Our main concern is when we are travelling abroad with her, should she be unfortunate to have a seizure and we were unable to deal with it or she reacted badly to her epilepsy recovery medication, who would be there to help us. We always make sure we have an epilepsy travel insurance policy that covers her medical condition for our peace of mind, just in case!