Full-Blown Pain: A Personal Fight With the Enigmatic Pain of Cluster Headaches

It was a dreary Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. It was followed by rapid jolts, like lightning bolts. As each class came and went, the pain subsided and then came back with increased intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort behind a single eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Attacks usually start with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; others have continuous attacks, defined by the absence of long 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 thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

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

Nevertheless, the failure to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing texts suggest bizarre remedies for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode eased.

National guidelines on management advise that patients are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading neurologists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief bouts with infrequent attacks are handled with abortive treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a