Full-Blown Agony: My Battle Against the Mysterious Pain of Cluster Headache Syndrome

It was a gloomy weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain erupted behind my one eye. It was followed by quick stabs, similar to electric shocks. As each class progressed, the pain subsided and then returned with greater intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-on agony in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense pain behind one eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe pain around one eye that reaches its peak within a short time and continues 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 facial perspiration. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Support eventually 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 hid her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the failure to plan life around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

Headaches have been described throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing records propose unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief bouts with infrequent episodes are handled with acute treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a