Unbearable Agony: A Personal Struggle With the Puzzling Suffering of Cluster Headaches

It was a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation erupted behind my one eye. This was followed by quick stabs, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe pain behind a single eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with sudden, excruciating agony around one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several causes, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to plan life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value 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 documented throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Ancient healing records suggest bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in diagnosing the condition note this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches 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 misinterpreted her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack eased.

National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant neurologists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional episodes are managed with acute treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a