🔗 Share this article

It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain erupted behind my right eye. It was followed by quick stabs, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe discomfort behind a single eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Attacks usually begin with sudden, severe agony around one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small 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 Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient healing texts propose unusual treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Prominent experts in treating the disorder explain this.

In 1998, scientists released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short cycles with infrequent episodes are managed with abortive therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a