Cluster headache: Attacks occur in clusters with pain-free intervals lasting for months
Cluster headaches get their name from the fact that they occur in clusters, or groups of attacks, within distinct periods of time. These cluster periods can last from several weeks to several months or even years. During these active cluster periods, very severe headache attacks occur frequently. The headaches typically last from 30 minutes to 3 hours. Up to eight cluster attacks can occur per day. Therefore, during the active period, which can last for weeks or months, such severe headaches occur day after day.
In our work, we repeatedly see patients, especially those with cluster headaches, undergoing all sorts of surgical procedures out of desperation. These include, for example, repeated radical sinus surgeries, septoplasties, or operations on the cervical spine. It's common knowledge that patients with cluster headaches very often have all their teeth extracted before a proper diagnosis and understanding of the typical course of the headaches . The problem is that many patients, due to a perceived connection between a possible cause and their headaches, are deterred from scientifically evaluated treatment methods and therefore do not consistently follow the prescribed therapy. Further details can be found here .
Different forms of cluster headache
Outside of the active period, patients typically experience no attacks and may be symptom-free. This characteristic temporal pattern is the defining feature of cluster headaches. Very often, patients therefore have the impression that a treatment method that happened to be applied at the end of an active period is responsible for a perceived "cure." Others attribute the termination to a life event, a specific diet, or other measures that occurred before the spontaneous end of an active period. From a learning psychology perspective, the event is causally linked to the observed effect, without this causal relationship actually being proven. This effect also applies to physicians who evaluate their treatments without scientific rules and controls: if they notice that a treatment sometimes works and sometimes doesn't, a supposed correlation is perceived. In learning psychology, this is called superstitious behavior, which is particularly firmly anchored by the irregular reinforcement. A similar situation can be found, for example, in discussions about shingles. Here, too, spontaneous pain usually subsides after a fixed period of time, and the consultation is considered the cause, even though the spontaneous course without consultation achieves the same "success." However, due to a lack of scientific verification, this is overlooked, and there is a strong belief in the causal relationship. This approach is characteristic of pre-scientific medicine.
Many patients, suffering greatly from cluster headaches, try a wide variety of treatments in the hope of a complete cure. This is especially true for patients who do not experience effectiveness with scientifically proven therapies or who do not accept them. For this small group of treatment-dissatisfied individuals, the internet offers a multitude of therapeutic promises. These promises suggest that they can be completely cured of their cluster headaches and that they will no longer occur. Due to the specific course of cluster headaches, there are naturally always some patients who, coincidentally, undergo a particular treatment method at the end of an active period. Although a direct causal relationship cannot be scientifically established due to the individual circumstances, those affected then assume that the most recently used method has actually brought the active cluster headache period to a halt. However, if such methods are scientifically examined and systematically tested, it becomes clear that these seemingly astonishing treatment results are due to the purely coincidental timing of the individual episodes. For precisely these reasons, the providers of such methods refrain from subjecting these procedures to controlled scientific testing. Such a scientific analysis would quickly reveal that these are merely random occurrences, resulting from the specific course of cluster headaches. One example is the so-called "decompressive ethmoid-sphenoidectomy," promoted by the Swiss ENT specialist Novak (the so-called "Novak operation"). This is a potentially life-threatening surgical procedure in which extensive and radical tissue is removed from the nasal and pharyngeal cavities. This method is promoted not only for cluster headaches but also for weather sensitivity in migraines, tension headaches, and neuralgia. The surgeon himself does not assume a specific cause of cluster headaches that can be eliminated by septal correction, removal of the middle turbinate, ethmoidectomy, and sphenoidectomy, and promotes it for all primary headache disorders. He presents no controlled studies. Nevertheless, his therapy is advertised on the internet and in the media. A cure is promised for all primary headaches: “The findings in the present study have enabled the true pathophysiologic background, environment, and trigger zone for the development of migraines and so-called vascular idiopathic primary headaches to be documented and have made possible a successful surgical approach to the different types of headache.”
The scientific community is conducting intensive international research to find new therapies that are effective, especially for severely affected individuals with cluster headaches who do not respond adequately to standard treatments. These include, more recently, surgical procedures within the framework of neuromodulation. Due to the particular severity of cluster headaches, the possibility of deep brain stimulation was initially promoted with almost enthusiastic fervor based on anecdotal reports. However, controlled studies failed to confirm its effectiveness, and this method has therefore been abandoned for the treatment of cluster headaches. In contrast, the efficacy of other procedures, such as occipital nerve stimulation (ONS), has been confirmed in systematic reviews. Proven benefits, low surgical risks, reversibility, and practical application make this procedure a responsible option for treatment-resistant cases. The goal is to stabilize the pain-processing systems through electrical nerve impulses in such a way that cluster headaches are avoided as much as possible, or occur significantly less frequently and with less intensity. International scientific studies have provided evidence that neuromodulation procedures can be effective for people severely affected by cluster headaches or other serious pain conditions. These are not untested anecdotal reports, but rather treatment outcomes documented in internationally replicated and controlled scientific studies. For this reason, such therapies are offered to patients by clinics operating according to scientific criteria and are covered by health insurance.
Unproven procedures that have not undergone such testing are offered and advertised by individual providers, but they lack scientific evaluation and acceptance by the international scientific community. A specific example of such a procedure is the ear, nose, and throat surgery described above, performed by a Swiss provider. If you enter the keyword "headache and treatment methods" into an internet search engine, you will find a countless, almost bizarre variety of "treatments" offered to those suffering from severe headaches. These methods promise that migraines and cluster headaches can be surgically removed and cured at their root cause.
The sheer variety, diversity, and sometimes bizarre measures imposed on severely affected individuals should give us pause. These measures are publicly promoted without controlled scientific testing, based on the individual opinions of affected patients. Superstitious behavior leads to alleged sensational cures, which are then proclaimed with a missionary zeal. At the same time, patients are made insecure and subjected to potentially life-threatening risks or costly, ultimately frustrating therapies. The discussion in the forum of cluster headache self-help groups .
It is therefore all the more important that the efficacy and safety of procedures are tested by specialized centers and the scientific community in freely accessible, controlled publications before they are generally recommended. This is especially true when the costs of therapies are imposed on the insured community, meaning the general public is expected to bear the financial burden. It is also significant because such procedures can involve risks and side effects that, without proven benefit, can even lead to life-threatening complications in individual cases. This is particularly true for the so-called Novak procedure, which is known to cause life-threatening bleeding.
Cluster headaches can generally be treated very quickly and effectively using today's scientific methods. They are a prime example of how headaches can be diagnosed very specifically and treated very well with modern medical procedures. The fact that an active cluster headache episode ends in an individual case, and that this end is causally linked to a specific therapy, does not constitute proof of the assumed mechanism of action or the development of cluster headaches. We repeatedly see patients who initially underwent such therapies and, due to the absence of attacks, enthusiastically promoted these methods for months, only to regret, upon experiencing another acute cluster headache episode, that they had perceived such a connection and had undergone the corresponding treatment.
international headache classification includes a subtype of headache attributed to so-called mucosal contact points. This is based on the assumption that the mucous membranes of adjacent nasal conchae lie against each other, causing mutual pressure. A similar premise underlies the ENT surgery promoted by the Swiss provider. The latter assumes that a wide variety of headaches arise from such mucosal compression. However, scientific literature characterizes a very specific subtype of headache as being caused by a mucosal contact point. This pain occurs around the eye, in the area of the canthus (eyelid canthus), and in the zygomatic region. A mucosal contact point can be identified through nasal endoscopy or CT/MRI imaging. A headache caused by a mucosal contact point can be detected by changes in mucosal displacement depending on changes in gravity when shifting between lying down and standing up. The headache also disappears within 5 minutes after local application of anesthetics to the area of the middle turbinate. The headache typically disappears within seven days after surgical removal of the mucosal contact points. These descriptions make it clear that very specific conditions must be met to establish a connection between the headache and changes in the nasal turbinate or nasal mucosa. The resulting headache is not comparable to a cluster headache.
