Epilepsy affects about 50 million people worldwide, according to the World Health Organization (WHO). It is one of the most common chronic neurological diseases, characterized by recurrent seizures. Christoph B. had his first epileptic seizure at the age of 13. Today, he is 100% seizure-free and no longer suffers from the severe side effects of his antiepileptic drugs, which confined him to bed. Thanks to cannabis as a co-medication, the young man can pursue his profession.
Kalapa: How old were you when you were diagnosed with epilepsy?
Christoph: I was 13 years old then. I was traveling back from vacation with my parents and noticed that I was somehow not feeling well. At home I collapsed in my room and had my first epileptic seizure with severe twitching, which also caused me to bite my tongue. The doctor then diagnosed idiopathic generalized epilepsy.
Kalapa: You have tried various antiepileptic drugs over the years, some with very severe side effects. Nevertheless, the standard therapy did not have a sufficient effect on you…
Christoph: Initially, I was prescribed a medication by my doctor that did not help at all. It was later determined in a clinic, that this medication is not suitable in my case at all. A new therapy was then initiated at the Bethel Epilepsy Center. This was some help, but I continued to have regular epileptic seizures.
But the biggest problem was that this therapy produced bad side effects like severe dizziness, which forced me to spend the day in bed. The dizziness made me unable to do anything, and I also had severe pain, migraines, and I was very tired all the time. Of course, this was also problematic professionally. At that time, I was in training to become a salesman. Due to my poor condition at that time, I was barely able to complete it.
So yes – I have tried a few medications over the past few years, but none have helped enough. I had to fight with strong side effects like dizziness, migraine and fatigue, and I gained 18 kilos.
Kalapa: How did you learn about cannabis treatment and when did you first come into contact with it?
Christoph: I heard about cannabis treatment through another patient who had good success with it. That was after 2017, when this possibility was legally created. I had contacted a doctor in Freiburg who was also open-minded about this therapy. However, when I was there, an assistant doctor told me that they do not prescribe cannabis. I was then given a new drug, which again caused strong side effects. Therefore, I started a new attempt and visited a private doctor in Bielefeld. He told me that I had tried and exhausted all options, so I was ready for cannabis therapy. Unfortunately, I could only get a private prescription there, as a self-payer.
Kalapa: How has your health changed as a result of cannabis?
Christoph: Cannabis made the severe side effects go away. Today I have fewer side effects, no more seizures and no more dizziness. Before, with the old medications, I suffered from severe side effects, as I said, but in addition, the therapy was not sufficiently effective. I had severe seizures every three to four months. At night I often had smaller seizures and after which I was not doing well during the day. With my cannabis medication, I can pursue my work, full time. I used to be on sick leave 10 days a month at times, but today I am much more efficient. And I no longer have problems with weight gain.
Kalapa: How did your treating physician react when you first approached him about cannabis?
Christoph: I discussed the topic with my neurologist, but he had doubts at first and also no experience with cannabis therapy. After I had gone to the private doctor and started the treatment, the success and the improvement of my condition convinced my doctor. Now my neurologist and my family doctor, both licensed by the health insurance, prescribe my cannabis flowers.
Kalapa: Do you have health insurance coverage?
Christoph: No, unfortunately not. I pay 600 to 700 euros a month for medication, sometimes even 1,200 euros. That is a financial problem despite a full-time job. In 2020, I submitted an application for cost coverage, but it was rejected by the MDK, even in the review. And that, although my neurologist writes in his medical opinion of the “resounding success” of the therapy. As a result, I hired a lawyer and filed a lawsuit against the health insurance company. But this is still ongoing, I am still in court.
Kalapa: Do you need any other medications besides cannabis flowers? And how are you today?
Christoph: I now take a certain antiepileptic plus flowers that I vaporize. With this I am seizure-free. I still have seizure pains, especially at night, but they are getting better with vaporizing. During the day I have some pain in my calves, but the cannabis relieves my pain. Today I feel much better than before and I can work normally.
What is Epilepsy?
Epilepsy is a disease in which the neurons in the brain are too active and become overexcited. This leads to so-called epileptic seizures. The severity, duration and severity of these epileptic seizures vary: from brief twitching of individual muscles to severe convulsions of the entire body with loss of consciousness. Depending on the type of seizure and its severity, the affected person is at risk of injury, for example, from falling. It is not uncommon for strong muscle contractions in the jaw to result in bite injuries in the area of the tongue or cheek. Depending on whether both hemispheres of the brain or only limited areas of one hemisphere are affected during an epileptic seizure, experts distinguish between generalized and focal seizures. Furthermore, seizure types are differentiated according to their severity.
Epilepsy can occur at any age. Between seizures, there are usually no physical symptoms. However, many people are afraid of having another seizure. Medication can help prevent epileptic seizures and maintain a good quality of life. In up to 80 percent of epilepsy patients, freedom from seizures is achieved with optimal therapy. For those for whom anticonvulsants do not bring the desired success, the disease is a particular burden.