Teri Robert  
Patient Educator & Advocate, Author
Help for Headaches and Migraine Disease


RE: Understanding Cluster Headaches

If you're reading this, someone close to you experiences cluster headaches. Cluster headaches have been called “suicide headaches.” For those who have experienced them, there is no doubt that cluster headaches are the most painful headache anyone can have. The pain has been described as "boring," "tearing," or "burning." Analogies also are used, such as "a hot poker in the eye", or as if "the eye is being pushed out." Anyone who has ever had a cluster headache has no doubt what they are. It's no exaggeration to say that the pain and desperation of cluster headaches have actually led to suicides.

Here are some basics about cluster headaches that you should know:

Cluster headaches are attacks of severe, strictly unilateral (one-sided) pain which is orbital (around the bony cavity that holds the eye), supraorbital (above the orbit), temporal (at the temple) or in any combination of these sites, lasting 15 to180 minutes and occurring from once every other day to eight times a day. The attacks are associated with one or more of the following, all of which are ipsilateral (on the same side as the headache): conjunctival injection (the forcing of a fluid into the conjunctiva, the mucous membrane that lines the eyelids), lacrimation (tearing), nasal congestion, rhinorrhea (runny nose), forehead and facial sweating, miosis (abnormal contraction of the pupils), ptosis (drooping of the eyelid), eyelid edema. Most people are restless or agitated during an attack, and cannot lie down.

Here are some cluster headache basics:

  • Cluster headaches affect approximately 4% of the population, occurring more frequently in men than women.
  • Cluster headaches usually last 15 to 180 minutes and can occur many times in one day.
  • Cluster headaches are not NOT a psychological disorder. The symptoms are neurological in origin and very, very real. Cluster headache sufferers are not neurotic, lazy, "high-strung," overly emotional, or faking. They are in very real pain and physical distress.
  • Not all doctors have the experience and knowledge to properly treat cluster headaches. Finding a doctor to properly treat cluster headaches is one of the most important, and sometimes most difficult, steps in treatment.
  • There is NO CURE for cluster headaches. With the help of a qualified doctor, some suffers can can find preventive regimens that will prevent many, but not all, cluster headaches.
  • Migraine abortive medications such as Imitrex, Zomig, Maxalt, Amerge, Axert, DHE, and Migranal, may work for some cluster headache sufferers. It is sometimes very difficult to find medications that will relieve the pain and other symptoms of a cluster headache.
  • Cluster headaches can be disabling f to the extent that sufferers qualify for disability income or qualify for the Americans with Disability Act provisions. There are some whose headaches so severe that doctors are unable to control the attacks, and the sufferer is unable to work or participate in "normal" daily activities. When a cluster headache strikes, most Migraineurs desperately need a quiet place for a while.

The cluster headache sufferer(s) in your life need your help and understanding. They need you to realize that they cannot help being ill, they are not "having headaches for attention," and they are sometimes unable to care for themselves. If they need medical attention, they need someone to take them and be with them. As well as being extremely painful physically, cluster headaches can be devastating emotionally and to relationships and careers. Since the disorder is often misunderstood, sufferers often feel alone, isolated, and desolate. They also often feel guilty because they are not able to "be there" for their family and friends as much as they want to be and because they may have to miss days of work. The person(s) you know need not only your help with getting their medicines and any medical care they may need; they need your moral support every bit as badly. A good, solid support system is as important to cluster headache sufferers as their health care teams. YOU are very important to them. That's why it's important that you understand cluster headaches.

If you have any questions or need more information, please email me at teri@helpforheadaches.com.


Teri Robert

©Teri Robert, 2001 - 2010