Full-Blown Suffering: My Battle With the Mysterious Pain of Cluster Headache Syndrome

It was a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my right eye. It was followed by quick jolts, similar to lightning bolts. As each class progressed, the pain subsided and then returned with increased intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe discomfort behind one eye that lasts for three hours.

About one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Attacks usually begin with sudden, severe pain around one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have continuous attacks, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several causes, 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 mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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

Ancient healing texts suggest unusual remedies for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent 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, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the attack eased.

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

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with occasional episodes are handled with abortive therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a