Epileptic journey in a summary. (Article 6 of the history of my epilepsy.)

My earliest experience of epilepsy I had when I was 19 years old. The first attacks were of petit mal nature, and neither myself, my family nor other people around me knew what was occurring. The attacks began with a brief euphoric moment which was followed by a feeling of helplessness and loss of control and then a confusion that quickly turned into a burning sensation in the brain of an explosive nature. During the fit / cramp, I was in a half conscious state. The whole attack lasted only seconds, and I did not lose my balance or fall. Afterwards, I was dizzy and a little confused, which I, however, could quickly repress. These attacks occurred during a period in my life with few regular habits and with little sleep. It was a generally uncertain and confused period filled with neurotic activities. This was a sturm und drang period in all respects, but fortunately without hard drugs. Coffee, cigarettes, wine, sex and sugar in all forms were the standing painkillers. Although I was always tired, I knew no boundaries, had no brakes and no one responded to my situation.

My first grand mall epileptic seizure occurred during this era, and it happened one morning on the train between Malmö and Alnarp, when I completely exhausted after a late night was on my way to work. Probably, I immediately fell asleep on the train, and I was not aware of what happened when I had the fit and the other passengers who knew me helped me and put me in a taxi at the station in Malmö to drive me back home to Alnarp. During the taxi ride, I quickly recovered, got anxiety over missing the job and immediately gave notice to the taxi driver to take me to my workplace in Norra Vallgatan in Malmö, even though I both had bitten my tongue and had urinated in my pants. A few days later, I spoke with the woman (whose brother, by the way, was the country governor in the region) who had helped me at the event on the train, and she said she thought I had epilepsy .....

Shortly after the seizure on the train, I was referred to the University Hospital in Lund and the doctor who then and for many years to come treated me was DR David Ingvar. He could not satisfy much of my curiosity about epilepsy. However, he treated me with friendly advice, tried to play down my situation and saw to it that I got strong and modern medicines, first Phenytoin and later Tegretol (both with the capacity to kill test rats and damage my liver). The medication repressed, not only my epilepsy but also knocked out much of my compulsive overactivity. Most of my energy was fortunately intact, and I could relatively soon after that I had accepted my fate begin to channel it into work and to start concentrate on my studies which I had defected.

After I had been given epileptic medication, I became obsessed with the idea that I would somehow find a treatment, a solution that would free me from epilepsy. This idea, obsession, was always in the back of my head, whether I was planning for my career, my studies, my family, etc.. Therefore, in the early 1970s, when I got The Primal Scream Primal or Primal Skriget as it was named in Danish in my hands I was totally convinced that I finally was about to find the code that would give me the solution to my epileptic problem. Now at least I had an unlimited hope and my stubborn and determined planning for a change had begun. However, it would take until 1978 before I got all the details on the spot and could move to the USA and Los Angeles for two years.

Between l960 and 1978, I had relatively few small or large seizures. However, one moment stands out, and took place when I lived in Jyllinge (Roskilde) in Denmark. One night when I was a nicely relaxed and celebrating life with wine and sex together with my wife, I had an unusual grand mall seizure that was different in that I had no cramp or fell, but rose and walked out of the house. I sleep walked and climbed a tall tree next to our house. My wife with the help of neighbors and called upon paramedics finally got me down and took me to the hospital in Roskilde, where I got numbing injections like those in “One Flew Over The Coco Nest.” (Fortunately I was not given lobotomy surgery, although I had fears). I had 15 years earlier read a novel, “Lucky Peter”, by Danish Nobel Prize winner Henrik von Pontoppidan, in which a boy climbed a tall tree and fell down and killed himself. The boy had been beaten and abused by his father in a way that reminded me of how my father had whipped and abused me when I was 9 years old. Fortunately, there were my wife and others on hand to prevent a repeat of the tragedy in the Von Pontoppidan book.

In April 1978, I went through three weeks of therapy at the Primal Institute with daily sessions, and I had my first primal experiences. It was undramatic and very little happened except that I felt the pain when my sister who was born three years later than I, dethroned me and took my position as number one with my father. I had a flashback and saw her with blond curly hair, how she sat on my father's lap, and I got an insight into why I had been obsessed with girls with blond curly hair. In her early teens and as an adult, my sister's hair color naturally shifted from being blonde to be very dark which I had repressed. I intended for many years to impress my father with blond, curly fiancees and thus get his attention. The painful jealousy of becoming dethroned haunted me for many years and in many contexts. This experience, together with the pain associated with that my father abused me severely, as I mentioned in the context of the tree climbing in Jyllinge, were the most important experiences during my two years on the Primal Institute. An anticlimax which I accepted thanks to the fact that the two years in Beverly Hills, Los Angeles, was an amazing experience.

Before I moved back to Sweden in December 1978, I went for treatment at The Rolfing Institute in Boulder, Colorado. I got over five weeks deep tissue massage to restore the body's natural posture and structural integration, which certainly had a different, pleasant and very profound effect on me both physically and mentally. This massage technique, developed by the Swedish descendant DR Ida Rolf (who incidentally occasionally had collaborated with DR Janov) has undoubtedly been one of the reasons that I succeeded in turning grand mal seizures into a full re-experience of a very painful birth process. The physical structural integration has created the correct conditions to be able to feel and experience the pain that has been repressed over so many years and acted behind the painkilling neurotic behavior which I only with the help of luck have survived a few times.

So I was back in Sweden, disappointed of how little had happened from the point of therapy in sunny California. From a linguistic, cultural, and experience and enjoyment point of view, the two years were a wonderful surreal experience that everyone should experience. Fantastic 2 years!

However, being home and under the pressure of reality Primal Feelings began to explode. I got what I first thought were grand mall seizures during the dream sleep, but they did not end in loss of consciousness, but I remained conscious with a cramp that started around my chest and up through my throat, my mouth and face and eventually over my forehead and scalp. My fingers were hard pressed against my head, which suddenly changed and they began intensely to rub different points of the face, head and neck and my legs kicked frantically. The tensions turned into 1st line hyperventilation, and my body took a fetal-like posture. I went through various painful experiences of suffocation, swallowing my tongue (it went literally deep in my throat in a way that I would never be able to repeat on purpose), etc. A part of the process which was constantly repeated was that I was turned around 180 degrees with force, and I experienced how I was sucked out backwards while kicking my feet intensively.

This entire sequence of events, often repeated, were completed with a process in which my lips were drawn together, in a feeling of being extremely small, without teeth and a grunting sound comes out of the throat and developed into a high-pitched baby crying, which could last several minutes ( those who heard these sounds are fully convinced that they heard a baby cry). When the crying finished my primal emotions ended, and I felt a tremendous relief. It was like being reborn. The whole emotional and birth process always follows a certain pattern and is made with an automatism that I could cancel, but I could not change the order in which it took place. For each time the process was repeated, the terror and the pain subsided, and it was an interesting experience to get the insights of the effects which connected neurotic behavior has had on my daily life, being driven by the non experienced repressed pain from an abnormal birth process.

My mother who was firmly religious, but not at all fanatical, had during more than 20 years repeatedly explained to me that she had nothing to do with my epilepsy and that no one else in our family had epilepsy. So some time after I had returned from the USA I told her about Primal Therapy, and my hope to have found a possible solution to my problems. Suddenly, she began to cry (which itself was a rare phenomenon) and she told me about my painful birth, which had lasted for more than two days. This conversation with my mother was one of few real conversations I ever had with my parents together with a conversation I had with my father when he asked me to forgive him because he abused me 30 years earlier when I was 10 years. Two months later he died.

Back in Sweden meant that I had to start working again and for the next 15-20 years, it meant that I only had the opportunity to let deep feelings come up when the DR Janov arranged retreat for a week in Denmark, France, Switzerland or Norway. Especially, I remember a retreat in France (which incidentally was filmed by French television, which did a report which happened to be broadcast that month I started working in Metz, France ....). Then I lived through a birth primal, where I after the sequence, including pressure against my head came out with the whole forehead and head full of bruises which you sometimes see on newborn babies. During the 80s, I often had severe pain in my fingers. After a couple of years, I noticed that my undeveloped fingers had grown to normal size. During a 6-7 year period, my fingers grew 10-15 mm, and the pain disappeared almost entirely, and I went from small to medium size in gloves. In addition, the problem that my fingers turned white, numb and bloodless as the temperature fell below +10 Celsius or less, disappeared.

1997 after having worked myself into a serious burn out in my job as head of a German company (Swedish-owned) I decided supported by medical expertise and health insurance to choose an early retirement and take up my fight against epilepsy and neurosis by myself but with Primal Therapy as a model. During a 2-3 year period, I went into my epilepsy. I kept a journal of the events, so I have excellent control of what was happening. For the first time since I started with Primal Therapy, I decided to scrap medication and allowed voluntarily to have major seizures. I had dozens of large seizures every month for more than a year. Gradually, the grand mall seizures turned into birth primal of the kind I have described earlier and the petit mall seizures turned into what can be described as hallucinations. I had support from my wife, my neurologist, my danish psychiatrist and my homeopath. They were skeptical but loyal to my way of curing my epilepsy and their risk was limited. A few years later, my neurologist invited me to a meeting with the other neurologists at Helsingborg Hospital. All thought it was very interesting, but that it would be difficult to apply my method on other patients, which I obviously agree with if treatment is continued after the current methods.

The birth primal was of the same kind I had had 15 years earlier and for a long time I went  into primal 2-3 times a week and each lasted about 1-2 hours, a retrospective assessment because time does not exist during the primal experience. My life slowly returned to normal, and I became more relaxed and much easier to be with. Much of my need to control and dominate disappeared. After more than 35 years on Tegretol medication and the stunning and insensitivity that meant I became more delicate and sensitive and things that I had not previously registered could tear up emotions and create a mixture of light fits or hallucinations. Grand mall seizures and complete birth primal are largely gone. When it feels as a fit it is often more a feeling that my head is under pressure, which is active. I have a feeling that the head can burst and that I’m being close to death. When the pressure is released it is like a feeling that blood is flushed through the brain to such an extent that the release of emotions is faster than I have time to deal with. In this context, a hallucination can be described as a tsunami of feelings in the brain.

If I have time and have access to my bedroom, I can lie down and let what remains of the old birth primal come up. However, I do not always have the stamina go through the whole process and a hallucination that I mentioned is not as difficult as it may sound. Of course I'm still a little worried because I do not have a 100 percent guarantee that there may not be more than a hallucination. The feeling that the head and the brain becomes compressed has over the years moved towards a deep pressure inside the back of my head, which is not so painful, but on the other hand, slightly more unpredictable than the old pressure feeling over the entire scalp.

There are factors within the following three main areas, food, colds and emotional experiences that can help trigger a petit mall / hallucination. Since I have a tendency to hypoglycemia sugar is a sensitive nutrient that is causing the sugar shortage in the brain and may trigger hallucinations. If I avoid sugar and food rich in glucose much of my problems will disappear. Colds can play a role just when they break out, which probably has its roots in a somewhat weak immune system after many years of anti-epileptic medication (Tegretol).

To give an example of a how a hallucination can be created: I can walk around in a department store and suddenly get a glimpse of a face or a reaction that elicits a grievous memory of that I did not do as my critical father thought I should do. Below this feeling within the brain hierarchy lies even deeper memories of my painful birth, waiting to be released, which I obviously cannot do outside my home, and an overreaction / hallucination occurs.

Another example of an enjoyable hallucination is when I am in an emotionally delicate situation and a feeling emerges elicited by something I should not have said or done and that in this moment I have access to music, preferably very expressive string and violin music. A few times I have been lucky to be able to combine a hallucination with this type of music. This creates a sense of Dostoevsky euphoria, and I can enjoy the music through the feelings in the right side of my brain. The best way to describe it is to say that I have the whole string section of a symphony orchestra in my baby's brain, and I can feel the explosions of musical rhythms with all kinds of visual and vocal effects. It is both extremely enjoyable and painful at the same time. The epilepsy and primal feelings turned into an artistic thrilling experience. It has occurred a few times, and it has been very enjoyable to experience. It might be a good aphorism to use this musical experience as an example of my most desperate epileptic death experiences and my mind's ability to create its own bridges between pain and pleasure in many contexts. In this context Hungarian Gypsy music could act as a representative way to describe my life and my epileptic journey.

If I had not been bad, I had not survived, and if I had not been good, I had not wanted to live.