I went to see the neurologist to find out more information and why I am have the seizures. I found it was extremely interesting. A friend of mine came with me and helped by writing down the following information.

Consultation

"The neurologist started off looking at my scans that had been done before and after the operation.  He asked lots of questions and answered my questions in a patient manner and simplified quite complicated medical terms etc very well.

He did not use the word stroke but kept referring to what happened to me as the result "of the bleed."

The dark images on the scan after the operation are caused by the ventricles that have filled up the space that became available when the dead brain cells had been removed.

The bleed interfered with the passage of electrical signals that passed through that area of the brain. The area we are talking about is on the periphery of the left hand side of the head above the ear.  This means that body functions controlled by that part of the brain, namely speech, language, sight as well as the right arm and leg will have been affected.

The unusual electrical brain activity causing the seizures originates in the scarred areas of the brain, resulting from the operation to reduce the blood pressure and save the rest of the brain from further damage.

The difference between epilepsy seizures and other seizures like mine, is that the unusual brain activity in an epileptic seizure starts at the centre of the brain and propagates radically to the other parts of the brain. This happens so suddenly that the person gets no warning and basically faints. Epileptic seizures occur frequently and almost always need continuing medication for the life of the patient.

In my case, the unusual brain activity starts in the damaged area and moves around the outer perimeter inside the brain.  It starts in the right hand then arm and moves through the sight and speech areas. I can feel the seizure coming as my hand start shaking then the arm etc. In this way I get much more of a warning before the seizure, compared to an epileptic seizure.

The way it happens he explained with a rugby crowd metaphor: The periphery of the brain is represented by the spectators. During a match there is a low background noise from the crowd. Occasionally something exiting happens and the whole crowd is very noisy.  This is normal brain activity. In the case of scar tissue after an operation, that section of the brain behaves like the hooligans at say Castle corner with lots of sporadic noise not related to any event.  If this happens frequently it can start a Mexican wave phenomenon which goes in a circle that excites the whole inside periphery of the brain. This causes a local initiated seizure which is what happens to me.

Usually the normal brain cells next to the scar tissue do not get involved in the Mexican wave. It is only after a period of three months, in my case, the electrical activity eventually builds up and moves right around the inside periphery of the brain and causes the seizure. It would appear that adjacent normal brain cells normally refrain from joining in with the unusual brain activity. This allows the brain to repair its neural activity (basically rewires itself) and in this way heals its self.

According to the neurologist, four seizures a year are not a lot. He has epilepsy patients who have four seizures a day. I asked why nothing happened until nine months after the operation? He replied that seizures only start 6 to 9 months after the operation. He cannot say if the seizures will ever stop.

The drugs are given to suppress the abnormal brain activity. If that can be achieved the brain can heal itself in a relatively large percentage of patients. If after two years of drugs there are no seizures, they take the patients off the drugs. In about fifty percent of the cases there are no more seizures. On the remaining patients the drugs are restarted at low dosages and gradually increased until the seizures stop. This varies from patient to patient. In addition there are many drugs available, and each patient has to try the various drugs until they find the one best suited to them and the correct dosage.

He suggested that there may be a drug (A) that could suit Ross better. It is a more modern drug (A) than what I am currently using. It is also designed to be more effective in seizures that start from a peripheral area of the brain. It has fewer side effects than the original drug (B) which causes hair loss, shaking of the hands, lethargy etc. He could increase my current dosage to stop the seizures. However the side effects would become more intense. He said it was my decision which drug to continue with. I decided to change to drug (A).

As my seizures were three months apart it would need at least six months to determine whether the new drug was working. That was why I should give him feedback if things were not going well. The new drug has very few side effects and the doctor did not expect any problems, although you never can tell as during the phasing out period both drugs were being taken.

When asked what could cause the initiation of a seizure, the neurologist said in general that stress, tiredness, illness (low immune system levels), alcohol and tobacco all played a part. In my case I feel that it is related to stress and tiredness."

That was the end of the consultation.

I think the meeting was quite positive. The new drug regime should give me a better chance of having fewer seizures. If it does not work initially, the doctor will help me find the right drug and dosage. The drug usage will be increased if necessary with minimal side effects. It is important to stop all seizures as soon as possible as this will allow the brain to heal itself. If this works for a period of approx two years I have an even chance of not needing drugs.