🔗 Share this article

It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. Then came quick jolts, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind a single eye that lasts for several hours.

About 1 in 1000 people suffer by the condition, and males are more often diagnosed. Attacks usually begin with sudden, excruciating agony around 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 tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; others have chronic attacks, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records propose bizarre treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor talked me through oxygen therapy and medication until the episode eased.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief bouts with infrequent attacks are handled with acute treatment only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a