Unbearable Pain: My Battle Against the Mysterious Suffering of Cluster Headache Syndrome

It began on a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. Then came rapid shocks, like electric shocks. As the school day progressed, the discomfort eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind one eye that lasts for three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating pain focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize daily activities around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

Headaches have been described across the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records suggest unusual treatments for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially classified by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, 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. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode passed.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with acute treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a