Today, the results of a study on the treatment – by LUMC and Erasmus MC – have been published in the famous professional journal Neuroscience Lancet. It has been shown worldwide for the first time that severe cluster headaches can be reduced by placing a so-called neural stimulator in the back of the head to deliver electrical impulses.
no end to pain
Arthur van Nut (46 years old) was one of the first to receive such a stimulant. “He gave me back my life,” he says. “I really do. If I hadn’t had the surgery, I wouldn’t be sitting here right now.”
The pain was so severe. It’s as if a sore awl were stabbing his eye, and that’s on average six to ten times a day, he says. “With an attack, the pain kept building up, sometimes for 24 hours in a row. There was no end to it.” It was so severe that the words “this is no longer compatible with life” and “euthanasia”.
The study began ten years ago as an experimental treatment. “The doctors clearly told me all the risks. At first the neurostimulator broke, causing a cluster storm. I was put in an artificial coma for five days. After a few years, the battery had to be replaced, and last Monday the electrodes and extension cable were put in. “. There was a cable break in the system, which has now been replaced.
Arthur is recovering from his recent surgery, but will be back to normal soon. “I can go on living and enjoying my family again. That was out of the question a few years ago. I am so grateful to the doctors and nurses for that.”
Gus Timmermans, 53, could start his life again. He was diagnosed with cluster headaches in 2008 and tried all the medications that might help. The prednisone injection helped a little, the rest didn’t.
“Last July I had to quit, I can’t anymore. I had seven to eight attacks a day. Even the hair on my head was hurting. I tried everything and even thought this was no longer a quality of life”
Joss was eligible for treatment and underwent surgery on March 24. Now, three months later, he only used five pain relievers. “It’s unbelievable. I’ll start working again next week and get my social life back. My wife recently told me I’m a completely different man. I’m happy again, and happy. After this operation I can cry with joy.”
Cluster headaches are often so severe that they are sometimes referred to as “suicidal headaches.” There are 17,000 people in the Netherlands who suffer from cluster headaches. Among them, 3000 to 5000 have a severe and incurable form.
Michele Ferrari is Professor of Neuroscience at LUMC. He spent years researching cluster headaches. “You have different forms of mass,” he explains. “Patients with severe cases sometimes have up to ten episodes a day of severe headache, often one-sided. The pain is often around or behind the eye. The attack usually lasts one to two hours.”
These attacks are almost daily and also continue at night. This group has untreatable pain, and no medication appears to be effective. Many patients are stunned. “We don’t know how this severe type of headache develops, so finding a medication that works well is difficult.”
Ten years ago, Ferrari began its research into this problem. So far, 131 people have participated in the study. They were given a device in the back of their head that continuously gave electrical stimuli to the occipital nerve. “It fires inhibitory signals on some cranial nerves.”
The study was successful: In more than half of the treatment group who took part in the study, seizures were reduced by more than 50 percent. “Some patients respond very well to the procedure. Sixteen patients do not have seizures completely.”
The idea for the study came from an existing treatment using electrical pulses in the spinal cord to combat untreatable pain. “Nerves are like electrical wires. So those electrical impulses can also run in this area of the brain,” Ferrari says. Additionally, there have been some small studies that have indicated it may work.
The study was successful and last year the Ministry of Health, Welfare and Sports decided that the treatment would be compensated by health insurance.
Diagnosis is difficult
Cluster headaches are difficult to diagnose because they are a relatively rare condition. It is often misunderstood as a migraine headache. But treating migraines does not work with cluster headaches.
People who suffer from severe headaches, including cluster headaches, can contact the association All about headache.