Cluster headaches

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This information on this page was written by Margi, the wife of a cluster headache sufferer. Margi's husband (Mike) has suffered from clusters for 21 years. Margi is NOT a health care professional and this information should not be used to diagnose your headaches. It is simply her view of what cluster headaches are from her research and years of supporting a cluster headache sufferer.

A typical cluster headache cycle, for an episodic sufferer, most commonly appears during seasonal changes. The attacks generally last 6 - 8 weeks, having anywhere from 2 - 10 intense attacks a day, each one lasting (usually) between 30 minutes and two hours.

For many, the first signal of an impending attack is the presence of Horner's Syndrome which is a drooping of the eyelid and dilation of pupil on the affected side of the face. The pain quickly escalates from no pain to unbearable pain in 5 to 10 minutes and then subsides in the same manner it started, unbearable pain to no pain in 5 to 10 minutes. Attacks generally happen at the same time each day like clockwork. Attacks usually escalate from 0 to 6 or 7 (on the Kip scale) for the first day or two of the cycle, then 0 to 8 or 9 for the next few weeks, hitting 10 level pain directly at the peak of the cycle. The number and intensity of attacks increase steadily until the apex of the cycle is reached, bringing  the most number of attacks per day with the highest level of pain. The attacks then gradually start to diminish until the cycle is completely gone and the sufferer is in remission until the next cycle. Remission periods are completely unique to each sufferer, but generally range anywhere from six months to five years.

For chronic sufferers, however, the cyclical pattern is absent and the attacks persist throughout the year. The intensity of each attack varies randomly. Remission for chronic sufferers for longer than a 14 day period is very rare, more usually, only a few days at a time.

During a cluster attack, blood pressure elevates, heart rate increases, the body overheats, a ganglion lump on the back of the neck is quite common which becomes inflamed during an attack and diminishes when the attack subsides. Intolerance to light and sound is much more common with migraine sufferers than cluster sufferers, although some do report the same sensitivity and prefer to be in a quiet dark place to be alone, however, remaining motionless or falling asleep during a cluster attack is NOT POSSIBLE.

There is quite often nasal congestion and tearing from the eye on the side of the head that is being attacked. Attacks are usually unilateral (one-sided). Attacks normally occur on the same side of the face each cycle. Attacks very rarely "switch sides" in the middle of a cycle, but have been known to "switch sides" between cycles (right side one cycle, then left side the next cycle).

The pain is centered more on the face than on the rest of the head, specifically the eye, cheek, sinuses (which is why they are so often misdiagnosed as sinus infections). The sufferer can not function normally during an attack and quite often prefers to be left alone in order to deal with their pain. The attack commonly and regularly wakes victims from a sound sleep. The pain has been compared to amputation without anesthetic. Many mothers who are cluster sufferers describe it as a pain much worse than natural childbirth.

Quite often for a migraine sufferer, the slightest motion during an attack can be nauseating and they cannot tolerate any light or sound. It is rare that a true cluster sufferer can remain motionless during an attack because of the intensity of the pain.  Contrary to migraines, kicking, thrashing, pacing, rocking and banging the head are common during an attack. Vomiting is not a common episode for most, unless it is a side affect of medication.

Contrary to some beliefs, there has yet to be determined a stereotypical cluster sufferer. The incidence is higher in men than in women but generalities are difficult to establish. There is an excellent sufferer's profile survey on our website available to further demonstrate this point.

For much more detailed information on cluster headaches, please read the medical information.

Please consult your health care provider (preferably a neurologist) to accurately diagnose your symptoms. Self diagnoses of your headaches can be very dangerous. Drug interactions and over medication from self diagnoses can be life threatening.

Health care professionals are gradually becoming more informed about cluster headaches thanks to organizations like O.U.C.H., but please be honest about your symptoms so that your professional has a better chance of offering accurate treatment to ease your pain.



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