Unbearable Pain: A Personal Fight With the Puzzling Pain of Cluster Headache Syndrome

It was a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden pain bloomed behind my right eye. This was followed by quick shocks, similar to lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe pain around a single eye that lasts for three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually begin with sudden, excruciating pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children 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 portable toilet.

Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical medical records suggest bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

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

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, 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 clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack eased.

National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known people.

But leading specialists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Short cycles with occasional episodes are handled with acute treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a