My unique view on epilepsy

Epilepsy is a chronic neurological disorder which is relatively common (affecting about 1-2% of the general population). It is distinguished by unprovoked, ongoing seizures, the symptoms of abnormal electrochemical activity in the brain. These may occur throughout one's life or just during various stages of development.

There are several different types of epilepsy and they are classified by:
- The cause that first triggered the seizures
- What occurs during a seizure
- The location of the brain from where the seizures develop
- Through a series of defined epilepsy syndromes, and
- The events which may trigger the seizure

To make a diagnosis of epilepsy is actually quite difficult. This is because seizures can have causes other than epilepsy, including traumatic experiences, illicit drugs, smoking and alcohol. Usually a doctor can only make a diagnosis based on descriptions from family and friends. These include the type and frequency of seizures, and whether any events had occur before the seizures, such as alcohol abuse or a head injury.

If epilepsy is suspected, a number of tests are usually sought out. The simplest of these are a blood test to check if there are any other medical disorders, and a check of family history (a person's chance of epilepsy is greater if it is common within the family).

Later, a number of brain scans (CT and MRI scans) may be carried out to see whether there are any abnormalities of the brain. These include tumours (that's me), infections, brain damage, badly developed parts of the brain and abnormalities to blood vessels. If the type of seizure a person is having matches with a certain abnormality of the brain which is likely to cause those seizures, a very reliable (but not perfeect) diagnosis can be made.

The absolute best way to make an epilepsy diagnosis is through an EEG/video technique. This is where a patient is in hospital, hooked up to electrodes which measure brain activity, and is constantly videotaped. When a seizure happens, the neurologist will be able to see the seizure through video, and have a visual of brain activity during the seizure.

Whilst diagnosis through this technique is the best you can get, it is very rarely done due to the cost and inconveniences to the patient. For instance, if a patient does not have a seizure, the patient can remain in a hospital bed for weeks being monitored, and may have to be subjected to sleep deprivation, or other techniques, in order to help increase the likelyhood of a seizure.

An EEG/video diagnosis is usually only done when it is absolutely needed. This will usually be to confirm that a seizure is being caused by a tumour (or whatever) before surgery.

There are about forty different types of seizures, which can be split into two major categories; partial and general. Partial seizures start in one region of the brain and then may spread to others. Generalised seizures however, occur as a result of abnormal activity of the whole brain simultaneously.

Partial seizures, as they involve only one or several parts of the brain, are usually less severe than generalised seizures. They can often be unnoticed or confused with daydreaming, intoxication or just plain being strange.
- In simple partial seizures, no awareness is lost and one may simply feel a sense of déja vu
- In complex partial seizures there are changes in awareness and behaviour. A person will often start repetetive forms of motion, such as fidgeting, and will often give random and weird responses to questions that they are asked. They will also often repeatly enquire as to where they are, despite being at their home or in other familiar locations.

General seizures are the more serious types of seizures. Consciousness is always lost at the onset of a seizure.
- Generalised tonic-clonic seizures are the most serious, and most well known form of seizure. In these seizures, formerly known as grand-mal seizures, the body becomes stiff and then goes in to a series of convulsions. These may be as light as repeated twitching, or may be violent spasms which have the possibility to cause severe injury. These seizures usually last about two minutes.
- Absence seizures are often unrecognised, and are characterised by blank staring, unresponiveness, the immediate ending of any activity and the complete loss of facial expression. These seizures are brief, usually lasting two to twenty seconds.
- Myoclonic seizures commonly occur after waking and involve the brief but considerably noticeable muscle jerks. They usually only occur to the upper body, but can involve the lower body as well.
- Tonic seizures are the quick stiffening of the entire body. These can be dangerous because if a person is standing, they will immediately fall down. These seizures can also occur whilst sleeping. Atonic seizures are the opposite of tonic seizures, where a person will suddenly experience a complete loss of muscle tone over the entire body. However, much like tonic seizures, if a person is standing, an atonic seizure will make them fall over immediately. Tonic and atonic seizures are therefore commonly known as drop attacks.

So what about me?

I have been diagnosed with epilepsy for well over two years now and I must say, it did change my life. But here's the thing, it didn't change much.

I have complex partial absent seizures, and in my mind that means amusing seizures. Unfortunately, I have never been aware that a seizure has happened, so I am simply relying on the descriptions of my seizures that my family present to me. What they tell me is that I might be sitting on the couch and suddenly I will start to repeatedly pick at my clothes (or other similar random repeated motions) and continually swallow. Shortly after this, (when coming out from the seizure), I will usually start repeatedly asking "where am I"?, as I will often lose track of my surroundings. After coming out from these seizures I will have no memory whatsoever of them, and will often restart what I was doing before. I don't even remember asking "where am I"?

I also have frequent feelings of déja vu (simple partial seizures). This is the extent of my seizures.

Now why do my seizures occur?

Frankly nothing sets off my seizures. They are completely random, like most people with epilepsy. I certainly don't react to flashing lights or anything like that, which only affect the minority of people with epilepsy. However, the thing is, I have a brain tumour. It's benign and is located in my frontal lobes. I have had this tumour since I was born, however there were no indications of anything before I was seventeen and a half, which was when I had a series of seizures, which led to my diagnosis. This isn't to say that I might not have had previous seizures, after all, they could have gone unnoticed, which is a concept that inrigues me every day.

The night that I started having seizures I was taken to hospital. During this period, I was constantly having seizures. This was very lucky because at the hospital I had seizures in front of the GPs and also the neurologist that I saw that night (made diagnosis much easier). I was then put on medication for the seizures and several appointments were made for a few scans. A few weeks after this, my first MRI scan showed that I had a brain tumour. Lovely.

Before January

Since then, not much has changed. I have had several more scans and bouts of seizures, and every time I had a seizure, my dose of medication was increased. Now that I am on a very high dose of medication, my seizures have mostly stopped, and my epilepsy is mostly controlled. This is annoying however, because I was also told by my neurologist that if I had another seizure, he would start looking at brain surgery to remove the tumour. Here's the thing though, I could have had many seizures since then. Since I don't notice them, if someone else is not there, they don't get noticed. Something to think about...

Frankly, I want to have the surgery. The risks are very low, and I would love to have the chance of a seizure almost entirely gone from my life. Cross fingers. Just one more seizure that is actually noticed!

*NOTE* A while after writing this I had another seizure. I have currently been prescribed to another medicine in addition to tegretol, and I have just seen the surgeon who would do the surgery. So, not long now :)

*Since January

At the time of writing this little segment, I am in a very different situation to the one I was in at the time I started writing. Firstly, I had those extra seizures and my neurologists realised that medication would not solve my problem. I was set for a continuing bumpy ride.

As my seizures couldn't be stopped by medicine, surgery appeared to be the answer. This meant that early this year, I was booked in for a week at hospital to be monitored using the EEG/Video technique mentioned earlier. It wasn't too bad. I got to watch tennis and videos all day, hang out with my mum, and the other lady in the double room in the same situation as me was very friendly. Unfortunately I wasn't having any seizures. Enter sleep deprivation. As the week drew to a close I had been allowed 4 hours sleep each night. However as it was often very hard to sleep, some nights I wouldn't sleep at all. I was knackered. However, on the second last day I woke up in the middle of the day feeling a bit "funny". My mum told me that I had had a seizure - a clonic tonic seizure. :o(

Therefore, I had had a massive seizure, had lots of questions asked to me ([such as can you wiggle your toes] to which I responded), been taken down two levels to the MRI, had an MRI done, been wheeled back, talked to mum and the hospital carer, and yet I remember none of this, despite having been able to talk and think during those times. Although this was my first and only clonic tonic seizure, this absence of memory that occurs with seizures, will almost always occur during other types of seizures as well (including partial absent seizures - my kind).

After the seizure, I was allowed to go home and my next course of action would be to talk to the surgeon who would do the operation. At this point I was still very keen on surgery. This was compounded by the fact that I had now been daignosed with depression. Main side effect of my new medication - depression.

I hated medication and its side effects, and I honestly didn't think it would be too bad an operation. When I met the surgeon, I had gone off the bad medication and was on a new medication as well as tegretol. Despite the change the, albeit infrequent, seizures continued. Three medicines had failed me, and I was looking at about a 1/500 chance of finding a combination that might actually stop my seizures. Surgery was looking pretty good.

When I came up to speak to the surgeon, I had almost made my mind up. Both neurologists were talking about it very highly, medicine won't work, and the success rates are higher the earlier you do it. However when I spoke to the surgeon, this veil of confidence came crashing around me. I learned almost exactly what they were going to do to me.

Previouly, I had thought that the abdormality was located at the edge of the brain, and surgery would not involve cutting through good brain tissue. I was wrong. As it turns out, parts of my amygdala and hippocampus were damaged and were to be taken out. These parts are deep in the brain, and they would be cutting a deep 4-5cm wide hole out of my brain. Bugger.

Now, granted I am left hemisphere dominant, and they would be taking out a bit of the right side. Granted, people can still interact with others with half of their brain removed. Granted it's actually quite a routine operation, and yes most of the stuff taken out is already damaged. Still... I don't want a big hole in my head.

They told me the biggest risk was of it not working (20-30%)
Memory loss (<10%)
Loss of peripheral vision (<5%)
Other uncommon but serious risks such as death, stroke, etc...
With a big portion of my brain just gone, might I lose cognitive ability???

So I right now face a tough decision in my life. Is it worth it?

You might get an update sooner than you think...

Having epilepsy really isn't too bad, it's just annoying. For instance, I really shouldn't go swimming alone. If I did and had a long seizure, I could drown. Which, simply put, would suck.

The other major problem for me is taking the tegretol tablets twice a day. I have to take them with food, so I take them during breakfast and dinner, however, I can't consume dairy products with them. Not too much of a problem, but for me that meant eating something other than cereal for breakfast, or eating before breakfast, just to take the tablet. So now, I drink water or juice, instead of milk with dinner, and I have a banana before breakfast to take my tablets. Not too hard done by there!

For most people, the major problem is driving. In Australia, and many other countries, you cannot drive until you have been seizure free for six months. This was ok for me because I don't drive, but I can imagine how having a seizure would screw up a lot of people's lives.

Honestly though, having epilepsy, for me at least, is not that bad at all. In fact I rather like the fact that I have a brain tumour and a neurological condition. To me they are simply quirks in my personality, and also happen to make excellent conversations with plenty of interesting people. After all, my brain tumour is (mostly) harmless and my epilepsy is only partially annoying, so really it could be much worse.

I hope people will take something in from this page. Thank you.