🔗 Share this article

It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day progressed, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches appeared frequently that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense discomfort around one eye that lasts up to three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually start with sudden, excruciating pain focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

---

Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient medical texts propose unusual treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen therapy and drugs until the attack eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short cycles with infrequent episodes are managed with acute treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.

The national guidance need revising to reflect a