Unbearable Agony: My Fight With the Mysterious Pain of Cluster Headaches

It began on a gloomy weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. Then came quick stabs, similar to lightning bolts. As each class came and went, the pain subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort around a single eye that persists up to several hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches usually start with abrupt, excruciating agony around a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described across the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient medical records suggest unusual remedies for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris'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 multiple operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm 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 drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief bouts with infrequent attacks are handled with acute treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a