A recent study suggests the suicide attempt rate among Cluster Headache patients is approximately twenty times the national average, and more than half have experienced suicidal ideation as a result of this disorder (Rozen, 2012). The purpose of this fact sheet is to alert you to this population, help you to understand the condition and intervene appropriately in the event of a call from someone who may be suffering from Cluster Headache and has become suicidal.
What is a Cluster Headache?
Cluster Headache is a rare form of headache disorder affecting approximately .2% of the population. This means there are hundreds of Americans who suffer from this condition. Cluster headache (CH) pain is considered the most severe of the primary headache syndromes and is arguably one of the most severe pain syndromes that afflict humans.
Cluster Headaches are so-named because they usually occur in clusters or groups, with periods of remission lasting for months or even years. During a cluster period or “cycle” attacks can occur several times each day, often awakening the sufferer from sleep. This is referred to as Episodic Cluster Headache. Approximately fifteen percent of Cluster Headache sufferers are chronic; meaning they have no significant periods of remission.
Characteristics of a Cluster Attack
The name “cluster” is derived from the tendency of episodes to occur in groups. These groupings may last from a few weeks to several months with periods of remission between attacks that may last months or even years. There is a rapid onset of the attack; which is unilateral (one-sided) and located in or behind the eye, or the orbital area around the eye. With little or no warning, the pain escalates rapidly and becomes excruciating in a matter of minutes. The pain itself has been described as sharp, pulsating or pressure-like and is experienced primarily the orbital region, though at times may be located in the upper teeth, jaw, ear and shoulder areas. Other symptoms may include eye lacrimation (watery eyes), nasal rhinorrhea (runny nose), nasal congestion, miosis (constriction of the pupil), ptosis (drooping eyelid), eyelid oedema (swelling of the eyelid), forehead and face sweating, nausea and vomiting, and restlessness and agitation
Distinctions between Cluster Headache and Migraine:
Although they share some similar features and some treatments, Cluster Headache is a disorder altogether more severe than the migraine or other types of headaches and will not respond to some customary migraine treatments. While people suffering from migraine may be sensitive to light or sound, and prefer to lie down in a quiet place, during a cluster attack, patients find it impossible to sit still. They tend to pace, scream, and may engage in self-injurious behavior like biting and head banging in an attempt to distract themselves from the pain. Unlike Migraine, more men than women suffer from Cluster Headache.
Identifying a caller who may be suffering from Cluster Headache:
In some cases, a caller may self-identify as suffering from Cluster Headache. They will be extraordinarily relieved that you have heard of this condition, even if your knowledge is very basic.
Many potential callers will not know anything beyond their own personal experience of the head pain involved in Cluster Headache attacks and may have limited access to healthcare and social support.
Problems with diagnosis and treatment:
Numerous researchers have found that as many as half of Cluster Headache patients go undiagnosed or misdiagnosed for five years or longer. This means that, while some callers may self-identify as suffering from Cluster Headache, many callers may not even be familiar with the condition. While appropriately credentialed healthcare professionals must make diagnosis and treatment recommendations, it is permissible to dispense information and resources from reputable sources like the ones below.
While the cause of Cluster Headache is not yet fully understood, it is thought to be related to a part of the brain called the hypothalamus. Medical treatment generally takes the form of preventive and abortive medications. Preventive medications are intended to eliminate or reduce the frequency of attacks for people who are “in cycle.” Abortives are intended to stop an attack. Narcotic pain medicines typically have little or no effect.
While you never want to discourage anyone from seeking medical help, there are some complications that are specific to this condition:
- It would be unwise and potentially unsafe for someone, in the midst of an attack, to drive themselves to an Emergency Department.
- Because Cluster Headache attacks are typically of short duration, by the time a patient arrives at the hospital and is processed, the attack may be over.
- Because typical pain medications are fairly ineffective, healthcare professionals who are not thoroughly knowledgeable about this disorder may view Cluster Headache patients as “med-seekers.”
- High Flow Oxygen, used properly, has been found to be a very effective abortive therapy (see below).
Types of calls you may receive:
It is possible that you will receive calls from the following:
- Someone who saw 1-800-273-TALK on a Cluster Headache website, discussion group, or elsewhere. (These sites do not have the staff, expertise, or resources to respond to suicidal callers).
- Someone who is in a Cluster Headache cycle and feels “at the end of their rope.”
- A friend or loved one of someone suffering from Cluster Headache and is concerned about the potential of self-harm.
- A caller who is in the midst of an attack and is calling in desperation. This should be considered the highest risk and you should keep in mind that the caller is in extreme distress and may be experiencing high levels of pain, frustration, and anger.
What can you do to help?
Having even a very basic understanding of this condition will be immensely helpful, as many people who suffer from this condition feel isolated, misunderstood, and even question their own sanity (e.g., “I must be crazy; it can’t possibly hurt this badly).
Offering hope is a huge gift. Remember that hopelessness and helplessness have high correlation to suicidality.
While you should NOT offer medical advice, there are numerous resources, discussion groups, and message boards available on the Internet. While SAMHSA and its affiliates do not endorse or have control of the content available on the Internet, some of the links listed below can be shared for informational purposes.
What to say and do:
Let callers know that you understand the seriousness and appreciate how debilitating this condition can be. Let them know that although they may not yet have found effective treatment, such treatment is available. Be patient and do not take it personally if a caller is rude or expresses anger. Inform callers of the resources listed below.
Things to avoid saying/doing:
Avoid comparing Cluster Headache with Migraine. Do not suggest that it will help if they simply lie down in a quiet place and try to relax. Do not treat them like they are simply being dramatic about having a headache.
Oxygen for CH Treatment: Information, Research, and Supplies
- Oxygen as an abortive Treatment http://www.clusterheadaches.com/O2/index.html
- “High-Flow Oxygen for Treatment of Cluster Headache” Journal of the American Medical Association http://jama.ama-assn.org/content/302/22/2451.full
- “Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.clusterheadaches.com/O2/Oxygen-survey-final.pdf
- Clusterheadaches.com store http://www.clusterheadaches.com/khxc/
Good Sources of General Cluster Headache Information
- National Headache Foundation http://www.headaches.org/
- Dr. Robbin’s http://www.headachedrugs.com
- Teri Roberts http://headaches.about.com/
- ACHE http://www.achenet.org/
- American Headache Society http://www.americanheadachesociety.org/
- World headache Alliance http://www.w-h-a.org/
Cluster Headache (and General Headache) Groups and Organizations
- OUCH UK http://www.ouchuk.org
Informational websites and forums
- The ClusterBusters forum: Researching treatments of cluster headaches and migraine pain through the use of psychedelic substances, which may be more effective and less destructive to the human body than traditional treatments.
- ClusterHeadaches.com: Cluster headaches and those that suffer, join the cluster headaches worldwide support group! This site is devoted completely and exclusively to those that suffer from Cluster Headaches.
- ClusterBusters: Cluster headache Research, Advocacy, and Education. Clusterbusters is a growing, international group of Cluster headache patients working together and actively investigating effective means to treat this neuorlogical disorder. Clusterbusters Inc. is an IRS-approved 501 (c) (3) non-profit research and educational organization.
- National headache Foundation http://www.headaches.org/physicians