Unbearable Pain: My 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 educator, attempting to manage a new class, when a sharp pain sprang behind my right eye. Then came quick shocks, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with increased force. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort behind one eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more frequently affected. Cluster headaches typically begin with sudden, severe pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the failure to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties 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 facility.

Headaches have been documented across the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical records suggest unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only formally classified by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition 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 pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short bouts with occasional attacks are managed with acute therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a