Today the outcome of a study on the treatment – by the LUMC and Erasmus MC – is published in the renowned professional journal The Lancet Neurology. It has been shown worldwide for the first time that extreme cluster headaches can be reduced by placing a so-called neurostimulator in the back of the head that delivers electrical impulses.
No end to the pain
Arthur van Nat (46) was one of the first to receive such a stimulator. “It gave me my life back,” he says. “I really do. If I hadn’t had the surgery, I wouldn’t be sitting here right now.”
The pain was that intense. As if a red-hot awl was stabbing his eye, and that on average six to ten times a day, he says. “With an attack, the pain kept piling up, sometimes it went on for 24 hours in a row. There was no end to it.” It was so intense that the words ‘this is no longer compatible with life’ and ‘euthanasia’ have been dropped.
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The study started ten years ago as an experimental treatment. “The doctors told me very clearly all the risks. In the beginning the neurostimulator broke, causing a cluster storm. I was put into an artificial coma for five days. A few years later the battery had to be replaced, and last Monday the electrodes and extension cable .” There was a cable break in the system, which has now been replaced.
Arthur is recovering from his latest surgery, but will soon be back to normal. “I can go on living and enjoy my family again. That was unthinkable a few years ago. I am very grateful to the doctors and nurses for that.”
‘tried everything’
Jos Timmermans (53) can also pick up his life again. He was diagnosed with cluster headaches in 2008 and has tried all the medications that might help. An injection of Prednisone helped a little, the rest didn’t.
“Last July I had to stop working, I couldn’t anymore. I had seven to eight attacks a day. Even the hairs on my head hurt. I tried everything and even thought that this was no longer a quality of life.”
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Jos was eligible for the treatment and was operated on March 24. Now, three months later, he has only used five painkillers in total. “It’s unbelievable. I will start working again next week and have my social life back. My wife said to me recently that I am a completely different guy. I am cheerful again, happy. After that operation I could cry with joy. “
‘Suicide headache’
Cluster headaches are often so extreme that they are sometimes referred to as ‘suicide headaches’. There are 17,000 people in the Netherlands with cluster headaches. Of them, 3000 to 5000 have a severe, untreatable form.
Michel Ferrari is professor of neurology at the LUMC. He spent years researching cluster headaches. “You have different forms of cluster,” he explains. “Patients who have the most severe form sometimes get as many as ten attacks a day of extreme, often one-sided, headaches. The pain is often around or behind the eye. An attack usually lasts one to two hours.”
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These attacks are almost daily and also continue at night. This group has untreatable pain, no medicine seems to work. Many patients are distraught. “We don’t know how this extreme form of headache develops, so finding a drug that works well is difficult.”
Ten years ago, Ferrari started its research into this problem. To date, 131 people have participated in the study. They were given a device in the back of their heads that constantly gives electrical stimuli to the occipital nerve. “It releases inhibitory signals on certain cranial nerves.”
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The study was successful: in more than half of the treatment group who participated in the study, seizures have been reduced by more than 50 percent. “Some patients respond extremely well to the procedure. Sixteen patients are completely seizure free.”
untreatable pain
The idea for the study came to the investigating doctors through an existing treatment with electrical impulses in the spinal cord to combat untreatable pain. “Nerves are like electrical wires. So those electrical impulses could also work in this area of the brain,” says Ferrari. In addition, there were a few small studies that suggested it might work.
The study was successful and last year the Ministry of Health, Welfare and Sport decided that the treatment will be reimbursed by health insurance.
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Diagnosis is difficult
It is difficult to diagnose cluster headaches because it is a relatively rare condition. It is often misunderstood as migraine. But a treatment for migraines doesn’t work for cluster headaches.
People with severe headaches, including cluster headaches, can contact the association All About Headache.
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