🔗 Share this article

It was a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. This was followed by quick stabs, like lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort behind a single eye that lasts up to three hours.

Approximately one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to organize life around erratic attacks took its effect. 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 worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical records propose unusual treatments for what some experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially classified by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Leading experts in treating the disorder note this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the episode eased.

Official guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some people.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief cycles with occasional episodes are managed with acute therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a