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. Researchers from the Radboudumc write that this new, self-devised strategy seems to work. 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. Occipital neurostimulation (ONS) is an option if the usual medications do not work. A subcutaneous cable runs to the back of the head from a battery- usually placed in the buttock. There, the cable splits into a left and right electrode that excites the occipital nerve with electricity. In many cases, this neurostimulation decreases the number of seizures; 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.
Voltage Tuners
Linda Kollenburg of the Radboudumc sees many patients with ONS who come for check-ups. “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 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 sometimes even prevented.”
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 indeed works, people with a neurostimulator might be able to use this to reduce remaining seizures further. Now, when they have such attacks of cluster headaches, they 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, then that would be an important extension of treatment.”
Afraid to use it
In the study, published in The Journal of Headache and Pain, Kollenburg, Kurt and colleagues also asked why patients don’t use the remote control. “Often they are afraid that the neurostimulator will lose its function as a result,” Kollenburg said. “The seizures are so severe that patients are very happy with the reduction that ONS provides. The fear that they might have more seizures again prevents them from turning the knob themselves. If we can show in follow-up research that those gains are not lost and they can potentially suppress even more seizures with the remote control, then maybe they’ll dare and maybe we can start including that as advice.”
The researchers developed a hypothesis that explains why Voltage Tuning can (partially) contain the remaining seizures. Kollenburg: “We think the current strength to which the neurostimulator is now tuned stops many seizures. The seizures that still occur are probably the most intense ones. They break through the existing level of neurostimulation, so to speak. Turning up the voltage slightly at such times allows those seizures to stop. Whether this hypothesis is correct will have to be clarified in follow-up research. But it remains remarkable that we tracked this phenomenon by listening carefully to the patients themselves.”
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