It is particularly important that, in contrast to other primary headaches, cluster headaches are not primarily influenced by psychological mechanisms. Changes in lifestyle, relaxation techniques, stress management and other measures cannot significantly change the course of cluster headaches. Most cluster headache patients know at the initial presentation that drinking alcohol during the cluster period is “punished” with cluster attacks and avoid it on their own. In all cases, patients should be questioned regarding provocative agents.
It is particularly important that patients are informed in detail about their illness. The pain is usually devastating for patients. Without adequate information about the disease, without the certainty of which disease they are suffering from, without a detailed explanation of the cause of the disease and the development of the disease, there is a very high risk that patients will become so-called pain cripples and will not participate in social or professional life. It is therefore necessary that the treating doctor not only exudes diagnostic and therapeutic confidence, but also possesses and implements this security. Only through a clear understanding of the disease will the patient consistently undergo treatment and carry out the measures.
The patient should be informed and supported of the possibility of having a severe disability recognized. These are to be recognized in accordance with the health care principles analogous to trigeminal neuralgia with a GdB/BdS of 50 to 80, depending on the severity.
Information about self-help groups, education and possible support through internet forums should be provided (▶ http://www.clusterkopf.de/ , ▶ www.headbook.me )
At the first presentation, the patient should receive a precise treatment plan containing the individual measures and different treatment times. The patient should be encouraged to keep a headache calendar that can be used to precisely document the attacks and the attack phenomenology and to monitor their progression. The patient should be given information about how long the prophylactic treatment will be carried out, when he needs to take a particular medication and what side effects can be expected. He should also be informed about the possible course of cluster headaches and understand that remission phases occur over a long period of time and cluster headache periods can then reappear after months or years. He will then not helplessly accept ineffective treatment methods for cluster headaches, such as acupuncture. It is particularly important that this prevents “superstitious behavior” that could arise from a coincidence of inadequate therapy and the end of the cluster period. As well as through a coincidence of the use of ineffective therapy and termination of the spontaneous, time-limited acute cluster attack.
In view of the possible provocation of attacks by alcohol, vasodilatory substances such as nitrates or histamine, the patient should be informed to avoid such substances. This also requires a precise medication history. In some patients, nicotine can also provoke cluster headache attacks. For this reason, smoking patients should be encouraged to stop smoking. Nutritional factors do not have a major influence on the course of cluster headaches, which is why dietary measures are not promising for cluster headaches. Nitrate-free food (no pickling salts!) is recommended.