Unbearable Agony: My Fight Against the Puzzling Suffering of Cluster Headaches

It began on a dreary weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. Then came quick jolts, like lightning bolts. As each class came and went, the pain subsided and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-on pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense pain behind a single eye that lasts for three hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around erratic attacks 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 family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Historical medical records propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode passed.

National guidelines on management advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short bouts with infrequent attacks are handled with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a