Since 2002, I have been diagnosed with a form of epilepsy that causes me to have a full tonic clonic seizure as well as partial seizures – they’re not called Grand Mal and Petite Mal anymore.

This means that when I suffer a partial seizure, I can suddenly stop responding and look like I am gazing into space, which is a strange sensation because it’s just like being in a temporal stasis, one minute you’re talking to someone, the next things have moved around and you suddenly become very confused as your brain begins to process everything once again.

I used to wonder what it was like to be held in stasis like the fictional characters Austin Powers, Dave Lister and John Spartan, now I have a good idea and could even suggest ways to make them seem a bit more realistic next time.

When I have a tonic clonic seizure it’s a full on drop to the floor, thrash about and foam from the mouth job. These types of seizures can really knock me for six. It usually starts off with such a strong sensation of Déjà Vu that I get the same kind of nauseous feeling as when I get a bout of vertigo. It almost feels like I have fallen into a world of my own where I’m not running to the same timeframe as everyone else… think of those sci-fi films where a person goes “out of shift” with reality, they can see everything but yet are seperate to it. I’ll also get a shiver because I just know that I have been there before and will begin to “predict” what will happen next. I say “predict” as it isn’t really seeing into the future, it’s simply a lag that is present in my mind because its functions are being messed about with due to the impending seizure.

During the instances of Déjà Vu – which as I said, are very strong and profound sensations that affect my eyes (a strange vibration on them), stomach (that dizzy and nauseous feeling), ears (part of the dizzy sensation) and spine (shivers and my hairs standing up) – I can suffer a few partial seizures, but not always. To others I become confused, not sure of where I am or what I am doing but to me I’m in this strange “temporal disruption” and I’m trying to figure out and process what is happening to me. After all of this, I might or might not suffer a tonic clonic seizure.

Then, I’ll come through and it’s almost as though my brain has simply reset itself. Sometimes I’ll think that I have gone to bed and feel quite annoyed that my sleep has been disturbed, I’ll not know who or where I am though I do hold some vestigial knowledge of who I am as evidenced by some of my reactions to questions by medical staff such as “do you know who you are or where you are” with my response being “ask them” *points to parents* one time. I have no knowledge of what happened in the run up and it can take a good 30 mins before I start to remember what happened just before. If you want to know what it’s like when coming through, the closest I can describe it in words is when you first wake up which is prolly why I often think that I have gone to bed.

My first seizure was easily the worst I have ever endured, my bladder emptied itself and I bit down with such a force that I shattered my back teeth!
Thankfully I have only averaged about 1 of these a year and they are the really scary part of my affliction; this is due to the nature of my epilepsy.

Up until my first seizure, there hadn’t been any history of this condition in my family and since I have developed epilepsy at the tail end of/just after puberty, I resorted to reading any information I could find on the net. With the help of this info and a few comments from doctors, I can only come to the conclusion that the accident during a driving lesson the day before where a car rear ended me as I was waiting at a round-about caused some trauma to my brain as the back of my head bounced off the pretty solid headrest. This trauma then leads to my developing the seizures and a diagnosis of having epilepsy.

During the following months I was subjected to numerous tests and all came back inconclusive, they had no idea what causes my fits, just that I have them – It’s one 21st birthday present I would like to exchange!

So, after the doctors shrugged their shoulders at me and simply dished out some medication and long list of things I can’t do anymore I was left to fend for myself in a world littered with fresh dangers and only a medication standing between me and my “normal” life before.

Despite this rude interruption to how my reality had been running, I decided to not let it rule my life. I have seen a few people who live in such fear that a seizure will strike when they are doing something that all they are willing to do is wall themselves off and play it safe, never experiencing new things because of the chance of seizure during it. I am eternally thankful that my epilepsy is not photosensitive, but at the same time I have the curse of the unknown. Because of this very fact I simply approached a “we’ll see” attitude and found that my loved ones worry more about my epilepsy than I do!

That’s not to say I completely ignore my condition, as I have altered my approach to things a little in order to accommodate a constant monitoring of what I’m doing so that I can link it to any seizures or simply as another form of looking around before crossing a road. Basic safety awareness really, but I refuse to let it rule what I can and can’t do and will keep on living. I suppose I might take a different attitude if I suffered a greater frequency of seizures or if I had a more common trigger to them, but I would still try to live without letting it hold me back, I’m stubborn like that!

Over the years, I have been able to pin down the majority of my “triggers” using what is known as my “halo”. A persons halo is the sensation or aura they experience in the run up to a partial or full seizure and can be used to both learn more about your specific form of epilepsy and as a warning that what you’re doing might not be safe to do or might even be a causal effect.

I have already described my own halo earlier on and each one is different in its specifics for everyone who is a member of the epilepsy club!
From what I can tell, my epilepsy has a number of triggers that all work in tandem to bring about a seizure.

These are:
• Sleep deprivation
• Stress
• Constant high environmental temperature
• Lack of food over a long period of time, specifically lack of sugar

That’s not to say one of these on their own will bring about a fit, it needs to be a combination of them to break my tolerance level.

Now, this is the first I have mentioned tolerance level but this is the key to my recurring seizures and to how to control them.

The medication I was put onto simply raises this level beyond the threshold of the triggers mentioned above, however my confidence in the dosage is quite low due to the first time I needed a repeat prescription and the doctor commented “this dosage shouldn’t have any effect” and promptly doubled it.

Ignoring the fact that it has successfully controlled it, he increases a drug that has noticeably damaged my short term memory (unless that is another problem rising from my car accident), which coupled with their inability to determine what causes it leads me to rarely taking the pills as a consequence.

I am fully aware that I can do this due to my extremely low frequency of seizures, and I will take one if I know that I’ll be encountering a lot of my triggers (such as going to a hot country) yet beyond this I just don’t take them.

I do feel extremely fortunate that I my epilepsy isn’t the daily battle that others face, and to those who face such an existence you shall always have my utmost sympathy.
For me, it’s a time bomb without a display kinda thing where it’s the fear of when it’ll happen that holds the most impact rather than when it strikes – a biological terrorist so to speak.

If your epilepsy is similar to mine, don’t let the fear of a seizure stop you from living your life, we got it easy compared to the epilepsy others deal with on a day to day basis. On one level I feel lucky to have firsthand experience of such a strange experience, yet it is still a curse that always lurks in the back of your mind.