Excruciating Pain: My Struggle With the Mysterious Pain of Cluster Headache Syndrome

It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain erupted behind my right eye. It was followed by quick jolts, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense pain behind a single eye that lasts for several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks usually begin with abrupt, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly 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 husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the inability to plan life around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical medical records suggest bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Leading experts in treating the condition note this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief cycles with occasional attacks are managed with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection 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