My headaches tend to come in clusters, yet I haven’t got a cluster headache. How come? Once I get one migraine, it’ll often return day after day, before finally ending. But this is not cluster disease.
Cluster disease is a clinical term with a defined set of symptoms, including extreme headaches, so excruciating, the condition is also known as suicide headache. The pain is on one side of the head only, often stabbing, in or around the eye socket, or in the temple. It may extend down to the jawline, causing people to suspect a dental problem. It’s often accompanied by a runny or stuffy nose and watery eye on that side of the head and by localized swelling.
Unlike migraine, cluster disease affects more men than women, but is experienced by both sexes, and sometimes, though rarely, by children.
Pain onset often wakes sufferers a couple of hours after they’ve gone to sleep but lasts only a short time, typically from 15 minutes to three hours, escalating rapidly to reach full intensity within minutes but stopping equally quickly. Attacks can be very frequent and might repeat many times each day for a period of days or months before vanishing, often for long periods. The duration of the pain often lasts almost exactly the same amount of time whenever it strikes.
In contrast, migraine lasts longer and often has distinct phases, including warning signs (a prodrome) on preceding days and a migraine hangover (postdrome) when it finally subsides. Although migraine pain is often throbbing and one-sided, this is not always so. It can move about during an attack and can vary in intensity from a “muzzy head” to extreme pain, accompanied by vomiting and retching.
Some people also experience an aura, either before or during the pain phase. This can be purely visual, for example, zig-zag lines, geometric patterns or loss of vision, but can also include incoherence, muddled speech, or tingling or weakness in limbs. Photophobia, irritability and brain fog may all be troublesome, as can an intolerance of noise and movement, and sensitivity to smells or to touch (allodynia). Migraine can also occur without any head pain. There may be aura alone, a general feeling of malaise, or perhaps cramps and tummy pain, as in the abdominal migraine often experienced by children.
Someone with a migraine attack will usually want to lie in a dark, quiet room. A person with cluster headache, on the other hand, can’t lie down, and may pace, rock, or cry and scream with the pain but is not affected by light or sound.
Migraine can be chronic (15 or more headache days a month) or occasional (episodic). It can also be continuous for days, weeks, or even months. Although usually episodic, cluster headache too can become chronic.
There are several subtypes of migraine, some even causing temporary paralysis, fainting or blindness. Many experience symptoms that don’t fit neatly into the categories described by doctors and researchers. Sadly, it’s possible for an individual to get several different types of migraine, and to get both cluster headache and migraine, adding both to the burden of the disease and to the difficulty of diagnosis and treatment.
Neither condition can be cured, and no cause is known for either. Both can run in families but the genes involved seem to be many and complex. Abnormality of circadian rhythms is suspected in cluster headache because of the regularity of attacks and the association with sleep. According to the aptly named Organization for the Understanding of Cluster Headaches (OUCH), the hypothalamus releases hormones and chemicals that initiate cluster pain.1 Smoking and drinking alcohol tend to be higher in cluster patients than in controls2 but are not involved in all cases. Sleep apnoea may also be a factor, as may the change in seasons.
Migraine itself is common, with an estimated one billion people living with migraine disease worldwide but many headache disorders are relatively rare and diagnosis often takes years. With only 1 in 1,000 people having cluster disease,3 it’s entirely unknown to many doctors. Headache disorders, in general, are woefully under-researched and since most doctors have had only a couple of hours of training on them,4 often it’s up to you to research possible treatments and lobby for access to them.
Getting the right diagnosis is crucial to getting the right treatment. Keeping a headache diary helps for all headache disorders. If well organized and maintained, it provides written evidence of the frequency, severity and location of pain attacks, treatment tried and how effective this was. It assists communication with the doctor and is more likely to lead to effective management than a verbal description, which often leaves important things unsaid, or worse, misleads, due to erroneous memories. Most are appallingly inaccurate in recollecting details of our maladies. Ideally, the doctor should also provide a written treatment plan since we are equally bad at recalling what we’ve been told in a consultation (Laws et al. 2018).5
Effective management of both chronic migraine and cluster headache is, however, often possible through the use of preventive as well as acute medications. For cluster headache, Verapamil, lithium, or topiramate are proven prophylactics.6 Abortives must be fast-acting, due to the speed of pain escalation during a cluster attack. Both triptans and high-flow oxygen therapy7 are suitable. Newer options include a hand-held neuromodulation device, gammaCore, that works by stimulating the vagus nerve, and an injectable CGRP inhibitor, Emgality.
An anti-inflammatory regimen including high doses of Vitamin D and other supplements is reported to have helped 80% of sufferers.8 Although not clinically proven, melatonin has also been tried with some success as have psilocybin or magic mushrooms (shrooms),9 though the use of these is not authorized. If sleep apnoea is identified, a continuous positive airway pressure (CPAP) machine can be tried.
There are several websites dedicated to easing the burden of cluster disease, and these discuss treatment options and how to access them.
by Beth Jones, PhD
Migraine World Summit
- https://www.aafp.org/afp/2005/0215/p717.html, https://blog.themigrainereliefcenter.com/common-cluster-headache-triggers…-and-how-to-avoid-them
- World Health Organization. Atlas of headache disorders and resources in the world 2011
- Rosen N https://americanheadachesociety.org/news/importance-of-headache-education-medical-training-noah-rosen-md/
- Laws MB, Lee Y, Taubin T, Rogers WH, Wilson IB (2018) Factors associated with patient recall of key information in ambulatory specialty care visits: Results of an innovative methodology. PLoS ONE 13(2): e0191940. https://doi.org/10.1371/journal.pone.0191940
- Batcheller P 2014 A Survey of Cluster Headache (CH) Sufferers Using Vitamin D3 as a CH Preventative Neurology April 2014; 82 (10 Supplement) P1.256 https://n.neurology.org/content/82/10_Supplement/P1.256
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