Large Survey Results on Cluster Headaches

Intriguing Survey Results on a Very Painful Headache Disorder

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The best way to learn about a disease is to listen to the person suffering from it. That's why survey studies -- especially large ones -- can be quite informative.

In Headache, researchers Rozen and Fishman published results of a large survey that included over a thousand people with cluster headaches -- of which there are a little over half a million sufferers in the United States.

Here is a closer look at this fascinating survey:

The Survey Skinny

The survey was composed of 187 multiple-choice questions and was designed by the US Organization for the Understanding of Cluster Headache, or US OUCH, -- of which many members are sufferers of cluster headaches. The survey was promoted on the Internet on several cluster headache-related websites. Only people who were diagnosed with cluster headaches by a neurologist were allowed to complete the survey.

In total, 1134 people with cluster headaches completed the survey -- 72 percent were male and 28 percent were female. Every state was represented in the survey.

Diagnosis

It took 5 or more years to receive a correct diagnosis of cluster headache, according to 42 percent of the survey respondents. Other incorrect diagnoses included sinusitis, migraine, allergies, or tooth-related problems.

History of Prior Head Trauma

Eighteen percent of the survey respondents noted they had a history of head trauma.

Family History

Eighty-two percent of the respondents said they had no family history of cluster headaches, but half of the respondents did report a family history of migraines -- this makes you wonder whether there is a genetic link between migraines and cluster headaches and/or whether patients are misdiagnosed (diagnosed with migraines when they are really having cluster headaches)

Others Diseases

One-quarter of the respondents had a history of depression, and 14 percent reported a history of sleep apnea.

Auras

Twenty one percent of the survey responders reported an aura history before a cluster headache attack, the majority lasting less than 25 minutes. Nearly 100 percent reported agitation with their headache – engaging in activities like pacing or rocking back and forth, hitting their own head, or punching the wall.

Quality of Pain

Almost 85 percent of the responders stated their cluster headache pain was sharp, with nearly half reporting that their cluster headache could also be throbbing or pressure-like. 

Location of Pain

The majority noted the location of their headache was behind their eyes.  Others reported the upper teeth, jaw, ear and shoulder. Of the respondents, 49 percent reported pain on the right side of their head while 44 percent reported pain on the left side. According to the authors of this survey, the reason for this discrepancy is unclear, but a right-sided predominance for cluster attacks has been shown in other studies.

Only 3 percent reported attacks occurring on both sides of their head.

Smoking

Seventy-three percent had a current or prior use of tobacco -- either smoking cigarettes or chewing tobacco. Interestingly, 8 percent of respondents reported that smoking reduced the severity of an individual cluster attack, while 2 percent stated it reduced cluster attack frequency.

Alcohol

Almost 65 percent of the respondents stated they drank alcohol, and just over half reported alcohol as a cluster headache trigger.

Other Triggers

Other cluster headache triggers in order from most to least common included:

  • weather changes
  • smells
  • bright lights
  • flashing lights
  • watching television
  • hot wrap or hot shower
  • nitroglycerin

This is intriguing, as these triggers are similar to migraine triggers. The study did not determine whether their survey respondents also had a history of migraines, or if food and stress (two other common migraine triggers) triggered their cluster attacks.

Timing

The majority reported that their cluster headache attacks occurred around the same time each day – with 41 percent citing 2am as the most frequent time. Fifty-eight percent had cluster attacks between 7pm and 7am and 42 percent between 7am and 7pm.

Treatment

The majority of the respondents -- 70 percent -- had no procedures to treat their cluster headaches. But 15 percent had their teeth removed and 7 percent had sinus surgery. Others reported occipital nerve blocks or occipital nerve stimulator placements -- which targets the nerves at the base of the skull.

The Bottom Line

Some of the results of the survey are quite fascinating -- especially the similarity between triggers of cluster headaches and those of migraine -- and others are what we expect based on prior research.

There are some limitations to the study too -- a big one being that the survey was distributed on the Internet, so may not be full representative of cluster headache sufferers in the United States. Also, the diagnosis of cluster headache was not confirmed by a study-approved neurologist, or by criteria set forth by the International Headache Society.

Overall, the survey allows us to gain insight into the physical and emotional burden of cluster headache attacks.

Sources:

Rozen, T.D. & Fishman, R.S.(2012). Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden. Headache, Jan;52(1):99-113.

Russell, M.B. (2004). Epidemiology and genetics of cluster headache. Lancet Neurology, 3:279-83.

Tepper, D.E. (2015). Cluster Headache. Headache, May;5(5):757-8.

DISCLAIMER: The information in this site is for educational purposes only. It should not be used as a substitute for personal care by a licensed physician. Please see your doctor for diagnosis and treatment of any concerning symptoms or medical condition.

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