Fear of Sleep, the nightmare in the dark.

Have you ever been afraid to go to sleep? Have you ever wondered if it was only dreams that would radiate through your mind? As we enter the month of May, National Epilepsy Week 18th to 24th comes ever closer and Epilepsy Action is trying to educate people on the possible frequent suffering of different types of epilepsy.

Epilepsy is a well known disability but a branch known as ‘Night-time Epilepsy’ is not as widely recognized. It causes sufferers to have fits when they are asleep; adding to the fear by not knowing you are having one and most people sleep alone. Emma Roberts talks to Natalie Venning about her illness.

My first fit happened in my early teenage years. I was only 13 and for the first few months no-one knew what it was I had. I underwent three separate brain scans before the doctors at the private BUPA hospital in Taunton saw the similarities between my fits and epilepsy. However; the fits only happened in my sleep and during stressful periods like school examinations. They concluded that I was suffering from ‘Night-time Epilepsy.’

Due to my young age the doctors gave me a DVD to explain what epilepsy and night-time epilepsy was. I tried living life normally, although I had to return to Taunton from Glastonbury, an hour long drive, every six months for a check up with the specialists. My family didn’t treat me differently with the exception of my younger sister who didn’t quite understand what I had. I think she was afraid it could have been contagious and would not share a room with me in case I had a fit in her presence.

My parents became more strict with my sleeping patterns too; before they were quite lenient with me and I could go to bed when I wanted but when the fits started they were more adamant that I had a full night’s sleep so I would not grow tired; a precaution caused by the Doctor’s concern that lack of sleep was a main factor in the fits.

The main change to my lifestyle was that the doctors had prescribed me daily medication of Topiramate. It took a while for me to remember that I had to take medication, it was my parents that reminded me each night I needed to take it.

I didn’t fear the actual attacks at first as I was too young to understand the seriousness of what was happening to me each time; I had no recollection of an attack, only the feeling afterwards of being absolutely exhausted and aching. You don’t have the energy to do anything and there is a powerful nausea that sweeps over you. Most times I also bit my tongue which is painful when you eat for quite some time afterwards.

However, when I learnt that during a fit I could swallow my tongue, thus causing suffocation, and that it was fatal I felt, for the first time, fear of this.

The most poignant moment in how I viewed my illness was during the scenes in the film ‘Control’. Ian Curtis from Joy Division was having a fit. I got an almost first hand view of what it must have been like for my family watching me go through my fits. It wasn’t nice. I think it is scarier to watch someone else have a fit than to actually go through it yourself. Both sides are powerless against it; you can only wait it out.

The medication is now to a point where it combats the epilepsy well; the last attack was a year ago. I had been in London for a weekend and stayed up till one am, so the doctors had been right about lack of sleep having its role.

Yet still it had never really disrupted my social life. But when I started university my lifestyle changed. The social scene really opened up for me, I was out at parties nearly every night; but more importantly they went late into the night, and I started staying with friends chatting afterwards to get to know them as we have just met each other. Since the start of my medication I took it just before bed; fortunately I did remember in time the first couple of weeks to take it before I crashed out as I got back in, but there were close encounters when I almost forgot. It meant I had to decide to take it before going out. This change in my routine was difficult to get used to as when you are getting ready to leave your flat; medication really isn’t something you think about, especially when it is almost hardwired into you after five years of taking it before sleeping. My friends also lived in a different flat to me so I went out earlier than the event would begin. Although still the afternoon I was now taking my medication almost seven hours before I was going to bed.

I haven’t officially been told I can drink alcohol with my medication, but nor have I been told I can’t. Being at university I am delving into the life of being a student and am determined to enjoy the chilled out lifestyle on the social side as everyone else does.

Luckily I have fallen in with a good group of friends that understand my Epilepsy, and if I have forgotten, and also consumed some alcohol they will walk me back to my room to take my medication so that we can all enjoy the night out together. They have even changed their lifestyles to remind me like my parents did when I was younger.

Now I know what Night Time epilepsy is and the doctors are happy with my level of medication I no longer have to see the specialist in Taunton every six months. This is a relief now I live in Falmouth, but I do need regular checks ups with my local GP for reviews and to see how my prescription of Topiramate is affecting me.

I don’t see it as an illness or a disability myself, it is barely even there. There are people with general Epilepsy who have fits everyday; I haven’t had one for 12 months so I feel very lucky. Officially though, it is classed as a neuro-disability.

If any of the content of this article has affected you or you think that maybe you or someone you know has had an epileptic fit, during the day or night, then get in touch with your local GP to discuss it further.

Emma’s advice: If you bite your tongue like I do then it will hurt when you eat, so you may find it more comfortable to eat softer foods for a couple days that aren’t too hot. It will be a sensitive area for a time. My recommendation is to drink a lot of water and rest as you would feel very tired afterwards. Be careful if you have been social like I have now, looking back it is similar to how a hangover feels, so treat it like one and you will feel stronger and well gain quicker.

The side effects of Topiramate.

Emma’s experience: The main side effect is loss of appetite and that was the one that hit me most. I lost over two stone when I started the course of medication. There has actually been a choice of medication offered to me, the other had a side effect of gaining weight, which I really didn’t want at the time, so I was glad that Topiramate was the best option for me and has worked.