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

It began on a overcast Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden pain erupted behind my one eye. This was followed by quick stabs, similar to electric shocks. As the school day progressed, the pain eased and then returned with increased force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain around a single eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches typically start with sudden, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes began 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. Drinking in her teens, like several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, 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 looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been described across history. “The earliest 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.

Historical medical texts suggest bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.

In 1998, scientists released the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack 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 much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short cycles with infrequent episodes are handled with acute treatment only. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve signals.

The official guidance need updating to reflect a