Epilepsy:

Lara - Epilepsy

I have Juvenile Myoclonic Epilepsy which started very mildly when I was thirteen in 1983 but became gradually worse until by the end of the year 2000 I was experiencing myoclonic jerks almost every day, sometimes dozens of them. I have had three tonic clonic seizures over the years and each time my seizure threshold lowered and an increase in myoclonic seizures followed.

In August 2000 I was put on Lamotrigine by my neurologist and stayed on it for three months. The number of seizures I experienced remained the same. Each time I raised the dose of Lamotrigine it became more difficult for me to function normally as it caused dizziness and made it difficult for me to think clearly.

I also had chronic insomnia and this caused more seizures, as sleep deprivation is one of the biggest aggravators of seizures in JME. I was extremely anxious as a result of the lack of control I had over when the myoclonic seizures would occur and how they and the Lamotrigine made me feel.

I started treatment with Dr. Kaur in January 2001. She has been treating my seizures, insomnia and anxiety. By the end of January 2001 I had weaned myself off of the Lamotrigine. Using the EEG neurofeedback process I gradually learnt how to prevent the slow brain waves from getting out of control and leading to seizures.

Dr. Kaur treated me twice a week for six months, then once a week for six months and then once every two weeks for three months. I am currently only going for treatment once a month as the treatment comes to a close. The improvement in the frequency and severity of my seizures has been steady and gradual over the period that Dr. Kaur has treated me. When I started treatment I was having on average three myoclonic jerks every day. They caused me to fling my arm out, drop things or even fall down and afterwards I would feel fuzzy headed and confused. Now I don't have any myoclonic seizures. Occasionally, if I have a high temperature due to a cold or flu I might feel a small twitch in my head but I don't get any jerks in my body, I don't lose consciousness and I don't suffer any negative after effects.

The neurofeedback treatment has worked for me in two ways. It has provided me with a tool that prevents seizures occurring and it has also caused a general improvement in my brain wave activity.

My seizure threshold has been raised by the treatment and it is now rare that I have to apply conscious effort to prevent seizures occurring. If I do feel that the slow waves are getting out of control I am able to apply the techniques I learnt in neurofeedback to pull myself out of danger.

I feel much clearer headed, my anxiety is low and I rarely experience any insomnia. This is remarkable considering that events have occurred in my life that normally would have made me far more anxious. I have recently lost one of my main sources of employment as the company that I was working for went bankrupt and I have also separated from my long-term partner. I feel that I can overcome these problems and I have not seen any rise in seizure activity or instances of insomnia. I credit this to the effect the neurofeedback has had on my life by teaching me to control my brain waves.

I am now able to go about life as normal. Before the neurofeedback treatment I found it difficult to work as my mornings were disrupted by seizures. If I needed to get up early I would get insomnia the night before and then by the next morning I would be having too many seizures to go to work. Now I am able to take work that starts early in the morning and feel confident that I will make it in without difficulty. For the last three months I have even been able to wake up and start the day at 5.00 am to go to an early morning yoga class.

It has taken hard work to gain my freedom from epilepsy but given that I had this condition for over fifteen years and the horrible effect it was having on my life it is really very little effort to put in for such a great result.

Lara