Thoughts and reflections on epilepsy treatment. (Article 26 of the history of my epilepsy.)

After suffering from epilepsy for several decades, I have gained great experience from many neurological centers in various countries. ( MRI = Magnetic Resonance Imaging, I have, for example, been involved in four different countries). I have experienced how they have treated me, taken care of me, have talked to me or what atmosphere they offered and which general resources of a technical and human kind were available.

The focus of neurology,epilepsy, which I have met has been and is largely a clearly technology-dominated world, so I start in that end. When I debuted as an epileptic l960 EEG (Electroencephalography) was the instrument that dominated. It registered neocortical electrical activity and produced an electroencephalogram. A routine EEG measurement takes 20-40 minutes, plus preparation and measurement are usually done by 25 electrodes glued to the scalp in an international grid using a conductive gel. EEG measurements are to distinguish epileptic seizures from other types of disturbances such as psychogenic non epileptic disorders and variations of migraine and to characterize the attacks, to be able to ordinate medical treatment and to locate the origin of seizures and address of the brain to have a basis for possible surgical intervention.

I went through my first EEG-test in Lund l960 and the latest in Xàtiva, Spain, 2009. In between, I passed such a test each year. In addition, I participated two times in a 5-day continuous testing with portable fixed electrodes, which was a very hard experience. The outcomes have all had very small deviations compared to what has been considered normal curves. According to my favorite neurologist in Helsingborg, it has been very difficult to show abnormal responses in my brain's electrical activity,  although I had petit mall seizures during the measurements.

The big development step in neuroscience was when MRI was introduced. It is a fairly young technology and has been in operation little more than 30 years (compared with 110 years of X-rays). The first MRI study I was involved in took place in LA 1978 at UCLA (arranged by DR David Holden) when I was undergoing Primal Therapy. Later, I have been through similar tests at different hospitals in Sweden, Denmark and Spain. Apart from a Spanish study in 1990 in Valencia,  no abnormalities have been detected. (In Valencia, the doctor pointed to some minor irregularities which, however, were neglected when I presented the film for a Swedish neurologist.)

For medicines, I have been treated with a small number of variants. Out of a list of 30-40 international medication for epilepsy I have tried the following four during the many years: Tegretol, Dilantin, Lamictal and Keppra (names differ slightly between different countries). However, I never took them in combination. Most anti-epileptic drugs can have strong side effects, and my liver became negatively influenced by my Tegretol intake. On some occasions, I was kindly advised to be careful with alcohol consumption in view of my liver. These suggestions I received accompanying the annual general health screening at the company where I worked when epilepsy wasn’t in the news. Alcohol, I have largely avoided for 50 years, and that was why suspicions were directed against my Tegretol intake, which led to that, I eventually decided to close it. Tegretol is an effective medication for epilepsy, but it is supposed to be harmful to the test rats.

All neurology doctors, I have met have proven very uncertain or unwilling when I asked them to recommend anti-epileptic medications. If a drug has been effective and stable from the point of seizure without serious side effects a neurologist is reluctant to make changes no matter what other reasons exist, such as a sense of inertia and lethargy or due to sexual problems.

Medications and instruments (EEC and MRI) are universal in the neurological epilepsy management and my hopes that new cultures and countries could offer something different has ended in disappointments. Unfortunately, doctors, waiting rooms and receptions, are a reflection of the standard international pharmaceutical and instrument industry, which means they are a cold, technical environment with minimal time and understanding of innovative solutions. Doctors, trained neurological technicians on a high formal level, working with a complex problem and squeezed by limited financial resources and efficiency requirements. Logic, techniques and verbal ability dazzle us when we meet our neurologist. Expressions of the emotional right side of the brain, I have rarely witnessed at a meeting with a neurologist, and then I have been lucky in this respect, and met some of the best neurologists such as Dr. David Ingvar, Dr. Ingmar Nilsson, PhD. David Holden (an exception in the case of emotional expressions) and Dr. Gert Malmqvist to name a few.

Along with access to these skilled neurologists, I have had access to first-class clinics with the latest instruments. When I dare to be critical I try not to think of all the wretched creatures who lived in the wrong place with poor access to doctors without tools and a limited drug availability and without Social Security. My crying make me remember the story of when Hellen Keller, who was born blind and deaf, on one occasion later in life, wanted a new pair of shoes. Since she could not get them, she felt miserable. Until she met a person who had no feet ....

The world, who faces an epileptic, as I have described, is a quite unreasonable, formal and conservative world. Patients are often disabled, drugged by anti-epileptic medication and without self-confidence and resources to drive change and innovation. “In the world of the blind the one-eyed is King” is an old well-known expression of Rousseau. It is a world, I had to respect and to play a formal game with to get drugs, marriage licenses, driving licenses, etc.. However, I have always believed that there were other solutions, and I have on several occasions been awarded for tireless diligence. In particular, Primal Therapy helped me sensationally, but also homeopathy, the food sector (including health food), various massage techniques (including Rolfing) and physical training have proven very useful in helping to cope with and mitigate my epilepsy.

In my job as an internal change consultant working in an international environment, I have been accustomed to working with business plans, leadership and control. Business Plans have meant that we have developed visions, set goals and worked out strategies which a management team, with the ability and willingness to implement a project has been responsible for. A monitoring system has meant to quantify and check targets and to follow  the outside world and make comparisons where we stood ourselves from a competitive point of view. In my struggle with epilepsy and in search of alternative solutions my entrepreneurial thinking often has helped me to dare to take decisions that  have been different.

I hope that the future epilepsy treatment will develop a positive approach in which visions, goals and a team of responsible can raise the quality of treatment as well as the lives of the sick. The explosion of knowledge in the brain research and the dynamic therapies in combination with modern patient treatment give me the courage to be optimistic. Future neurological clinics will naturally evolve from today's technology oriented center, with the hunting for symptoms with drug recipes as the main weapon, to a more holistic treatment center. Here teams will analyze the causes which will be treated with therapies, diet, exercise, medication and surgery when all else fails.

Within a few years, our neurologists have gained a much better knowledge to define the type of epilepsy that we suffer from. There will obviously always be different reasons for developing epilepsy and the guidance of a neurologist is necessary. A neurologist is also needed to judge that criteria are met legally to obtain a driver’s license, do military services, etc.

Medications are from both a short and long term perspective a prerequisite for those who cannot or will not use therapy or other alternative solutions. For those who are able to go to therapy a flexible administration of medicine may act as a balancing aid. This flexibility will depend on teamwork between the patient, the therapist and the neurologist. The current knowledge explosion is likely to make it easier to be epileptic in the future.

“It is sad to live in a time when it is easier to split an atom than to blow up a prejudice.”  Albert Einstein