Full-Blown Agony: A Personal Struggle With the Mysterious Pain of Cluster Headaches

It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. This was followed by quick shocks, like electric shocks. As each class came and went, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches returned frequently that fall, and again in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense discomfort around a single eye that lasts up to three hours.

About 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around erratic 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 small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing records suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Leading specialists 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 attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode passed.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a