About Medial Temporal Lobe Epilepsy & Me
Based on my investigations and studies, I can say with almost 100% certainty that I’m suffering from Medial Temporal Lobe Epilepsy and have been now for around 12 years. I’m on 2000mg of Sodium Valproate and 50mg of Lamotragine perday. I think it’s controlling my gran mal seizures but nothing else.
MTLE in many cases presents itself without typical changes of “Mesial Temporal Sclerosis”, this basically means the brain will appear undamaged and won’t show up any abnormalities. As a result, MRI scans etc will often not pick up on this type of epilepsy.
This type of epilepsy that doesn’t present changes has also been termed as Paradoxical Mesial Temporal Lobe Epilepsy.
I have been suffering from this since around age 15 and as I write this am 27 years old, although, it has came much more to prominence since around age 20. This is interesting as generally this type of epilepsy is known to present it itself initially at a later age.
The studies around this that I have read may suggest an early event or problem with the brain or head can lead to this type of epilepsy. I may just be being paranoid but at birth I was the result of a 12+ hour labour, use of forceps to the head, came out a funny blue-ish colour and spent a fair while getting oxygen (or something along those lines – To be honest, I can’t really remember. This is just what my mum told me...).
Before I go any further with this, I will be mentioning the words “déjà vu” many times throughout this piece and I’ll do my best to try and describe the initial feeling of it that I get...
It is a feeling that, to be honest, is really difficult to describe. At first for example, I can turn a corner and see someone. I’ve never seen that person before and I know that but then, all the noises and surroundings are a flashback, everything is returning to me, the smells, even though I know I must be imagining them are here again. The worst thing about this is that my stomach is suffering a fright of out of the blue nervousness and my body feels really light, the front of my head above my eyes has a strange dizzy feeling. All of this has happened at the same time and within a millisecond.
Simple Partial Seizures
I can relate to many aspects & symptoms of simple partial seizure when relative to MTLE. Mainly mnestic linked like:· Déjà vu triggered by and relating to sounds, smells, surroundings, tastes...· Simple partial seizures spreading throughout either the rest of the temporal lobe or the whole brain and therefore leading to further types of seizures (regularly Complex Partial, see the next section)
With me, 90% of the time, a simple partial seizure will lead to nothing. It’s almost like I feel the quick initial flash of déjà vu hit me and my automatic reaction is something like me saying to myself in my head, “JAMES! QUICK! THINK OF SOMETHING ELSE! DON’T LET THIS TAKE OVER YOUR HEAD!”, then a quick shake of the head later it’s gone. But sadly sometimes, I just don’t get that shake of the head in time and this is when I’m doing things like playing football or at the gym and my focus and concentration is almost at 100% on what I’m doing. When I don’t get the “shake of the head” done in time, it 90% of the time leads to…
Complex Partial Seizures
Apparently these types of seizures impair consciousness to some extent, meaning altering the persons ability to interact with their surroundings. They usually begin with a simple partial seizure and then basically the simple partial seizure spreads to a larger portion of the temporal lobe. Apparently, signs may include, motionless staring, altered ability to respond, unusual speech or behaviours.
Going by the above description, I can safely tell you that I’ve had 100+ of these. I’d also say that these are probably 90% of the time preceded/triggered by simple partial seizures.
I often feel like a total dick after one of these, particularly on the many occasions when it’s happened when I’ve been playing football and I have to exit the game out of the blue. Like it or not, it does spoil the atmosphere for the guys playing as it gives a lot of people who’ve not seen things like this before a real scare and can spoil it in the same way as someone going off with a serious injury.
Another great example of how to really feel embarrassed and like a public fool is when it happens to you in a Tesco Express in the city centre (this happened at around 6pm on Mon 17/08/2009). One minute I’m walking round the shop, the next minute I’m sitting with a Tesco staff member giving me a bottle of water in the back of the shop. What?
This type of seizure will almost always leave me with an after-feeling of serious disappointment, a bit like a really bad unavoidable downer. I don’t know if the downer feeling is a result of, “oh for fucks sake, not again!!!” or if it’s just something in the brain that’s triggered automatically as a result of the seizure. It usually takes at least 20-30 minutes for the downer to start going away and I can get a bit emotional and inside I am generally full of rage at the shit card I’ve been dealt in life with this kind of rubbish.
Following complex partial seizures, I can often remember the simple partial seizure déjà vu feeling and the scenario but after the next stage kicks in, it’s all forgotten and I have no recollection of what’s happened.
The next 3-5 days succeeding the complex partial seizures will be littered with 1 second flashes and flickers of déjà vu which I guess could be classed as mini simple partial seizures. These annoy me and also to some extent scare me as I automatically fear another complex partial seizure or worse.
Secondary Generalized Tonic-Clonic Seizures
These seizures are ones which begin in the temporal lobe and then spread to the whole brain. These generally begin with a simple partial or complex partial seizure but then the arms, legs etc stiffen in a flexed or extended position. This is followed by coarse jerking etc.
I, in a way am fortunate to only suffer seizures of this severity in my sleep (nocturnally) most of the time. I’ve probably had 50 of these in the last 10 years of which around only 5-10 have happened while I’ve been awake.
The times it has happened when I’ve been awake I’ve, as you can probably guess, no recollection of. It’s happened in work before which was very embarrassing.
In my sleep it’s always the same story and same results. My Dad’s the only person to have witnessed any of my nocturnal seizures (and he’s seen quite a few of them!), even though he was sleeping in the room next door, he heard me falling out of bed and hitting the floor (it didn’t wake me up though!).
The post sleep-seizure war wounds are always the same· Sweating like rain running down a window· The inside of my mouth and tongue bitten to pieces and blood on my face as a result· Pain from leg tension and cramping resulting in me feeling like I’ve ran a marathon· 2 day headaches· General feeling of, for the want of a better word “depression” for a while afterwards.