Raise awareness for cluster headache

Today is International Cluster Headache Awareness Day. As you may recall from earlier features, cluster headache is characterized by one-sided, severe, stabbing pain that occurs in clusters. The attacks can be as brief as 15 minutes or as long as 3 hours. Each attack can occur every other day or up to 8-10 times per day. Episodic cluster headaches occur in cycles – days, weeks, or months of attacks – followed by attack-free periods of at least 30 days. Chronic cluster headache patients never get a break. It has been nicknamed “suicide headache” because patients often consider suicide as an alternative to the excruciating pain, which is considered one of the most painful medical conditions.

Diagnosis & Treatment

The average time from onset of symptoms to diagnosis is six years. Many patients, especially women, are misdiagnosed with migraine instead. When men report such pain, they are often viewed as “weak” and not taken seriously. Oddly enough, many patients find relief from inhaling 100%, high-flow oxygen through a non-rebreather mask. This inexpensive, effective treatment is often withheld from suffering patients because insurance companies refuse to pay for it or because doctors do not truly understand the nature of cluster headache. Other patients find acute relief from sumatriptan injections, but they are limited to only using injections a few times each month. Since cluster headache attacks occur many times per day for months at a time, these patients are left to struggle through attacks without relief.

There are few good preventive treatments and none specifically designed to prevent cluster headache. Verapamil is the most commonly prescribed. However, patients must be monitored closely for heart block because the necessary dose is much higher than would be prescribed for high blood pressure or migraine. It is not unusual for patient to take 400 mg per day or more. Topamax, Depakote, and Lithium are also prescribed. More controversial is the use of psylocibin (psychedelic mushrooms) to prevent cluster headache. Psylocibin is illegal in the U.S. and most other countries, so patients take great risks to use this treatment. Those who do use psylocibin report months or years of remission and find that the results are worth the risks. Advocacy groups like ClusterBusters support clinical research into the use of psylocibin to determine its effectiveness for cluster headache prevention. Despite early promising studies, its use is still prohibited by law.


Cluster headache patients suffer a great deal of stigma. Because the disease affects men more than women (3:1), the pain and suffering of male patients is often ignored or minimized. Even in developed countries, men are viewed as “wimps” if they complain of pain. For many years it was thought that cluster headaches only occurred in patients with a history of drug or alcohol abuse. Patients were treated as though they deserved their pain because of poor life choices. Many patients are still subjected to this treatment. It was also assumed that women could not have cluster headache. So female patients were diagnosed with migraine and treated accordingly. Unfortunately, standard migraine treatments are rarely successful in treating cluster headache. However, it is possible to have both migraine and cluster headache, even experiencing attacks of both simultaneously.

During an acute attack, cluster headache patients are unable to lie still. Light and sound are not bothersome. They rock, pace, and smack their own heads. Screaming and cursing are common, too. Many have reported banging their head against the wall or tying scarves or belts tightly to their heads for relief. During an attack, they are not rational or calm. If an attack occurs in public, bystanders are alarmed and often unnecessarily call 911 or the police. Because the pain is so severe, most patients are unable to communicate during an attack. Many have resorted to wearing an ID bracelet or carrying a small card that explains their condition to protect themselves from unwanted medical treatment or even arrest.

How you can help

Look for social media posts with the hashtag #underthehat or #clusterheadache. Like, share, and retweet these posts. Share this article on your social media pages, too. Cluster headache patient are our headache brothers and sisters. Won’t you help spread the word?

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