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People with chronic cluster headaches often benefit from neurostimulation. Nearly half of them turn up the current slightly if they still feel an attack coming on. This new, self-imposed strategy seems to work, write researchers from the Radboudumc. Follow-up research should show whether this is indeed the case.
Chronic cluster headaches often make people desperate because of the recurring intense pain attacks. If the usual medications don’t work, occipital neurostimulation (ONS) is an option. From a battery - usually placed in the buttock - a subcutaneous cable runs to the back of the head. There, the cable splits into a left and right electrode that excite the occipital nerve with electricity. In many cases, this neurostimulation decreases the number of seizures, and the remaining seizures are often shorter or less intense. In some patients, the seizures are even completely suppressed. Such a neurostimulator is implanted in the Head and Facial Pain Expertise Center, a collaboration of the Radboudumc and the CWZ, among others.
Using remote control
Linda Kollenburg of the Radboudumc sees many patients with ONS for a check-up. “Almost half of the people we talk to use the remote control to increase the current slightly, adjust the voltage a bit, as soon as they feel an attack coming on. That was really striking, because we don't give any advice on that. The patients who increase the voltage - we started calling them Voltage Tuners - say it gives them a tingling sensation that makes the headache fade into the background. The attack becomes shorter, less painful or is sometimes even prevented.”
Not previously described
The phenomenon “invented” by patients themselves is so striking that Kollenburg and neurosurgeon Erkan Kurt began researching it. “This has not been described in the literature before,” Kurt says. “But if this works indeed, people with a neurostimulator might be able to use this to further reduce remaining seizures. When they have such attacks of cluster headaches, they now still have to go on oxygen or inject a drug. If those attacks can be further reduced by patients being able to zap them away in part by themselves, this would be an important extension of treatment.”
Fear of use
In the study, published in The Journal of Headache and Pain, Kollenburg, Kurt and colleagues also asked why exactly patients don't use the remote control. “Often they are afraid the neurostimulator will lose its function as a result,” Kollenburg said. “The seizures are so severe that patients are very happy with the reduction ONS provides. The fear they might have more seizures again prevents them from turning the remote controle themselves. If we can show in follow-up research those gains are not lost and they may be able to suppress even more seizures with the remote control, then maybe they will have the courage to use it as well. At that time, maybe we can start including it as an general advice.”
Hypothesis
The researchers developed a hypothesis that explains why Voltage Tuning can (partially) curb remaining seizures. Kollenburg: “We think the current level of the neurostimulator now stops many seizures and the seizures that still occur are probably the most intense ones. They break through the existing level of neurostimulation, so to speak. By slightly turning up the voltage at such times, those seizures are then still stopped. Whether this hypothesis is correct will have to be clarified in follow-up research. But nonetheless, it remains remarkable that we tracked down this phenomenon by listening carefully to the patients themselves.”
Paper in The Journal of Headache and Pain: Occipital nerve stimulation for cluster headache: lessons to learn from the ‘voltage tuners’ - Linda Kollenburg, H. Arnts, M. Heitkamp, S. Geerts, C. Robinson, M. Dominguez, W. Mulleners & E. Kurt
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Pieter Lomans
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