Full-Blown Pain: A Personal Battle Against the Mysterious Suffering of Cluster Headaches

It was a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by quick stabs, like lightning bolts. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

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

About one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating pain around a single 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, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined by the absence of extended pain-free periods.

What connects patients is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for 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 remembers winning tickets for a major concert, only to have an episode inside a facility.

Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing records suggest unusual treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only officially classified by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. Prominent specialists in treating the condition note this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack passed.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short cycles with infrequent episodes are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a