Unbearable Agony: My Struggle Against the Mysterious Suffering of Cluster Headaches

It was a gloomy Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain sprang behind my one eye. Then came quick stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then returned with increased force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort around a single eye that persists for three hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic cycles; others have chronic attacks, defined by the lack of long pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having alcohol 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 eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described throughout the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Ancient healing records suggest bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, researchers released the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode passed.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined 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. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a