Excruciating Agony: My Struggle With the Mysterious Pain of Cluster Headaches
It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation sprang behind my one eye. This was followed by quick jolts, reminiscent of lightning bolts. As each class came and went, the pain subsided and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.
The headaches returned repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.
This condition often begin with intense pain around a single eye that lasts up to three hours.
About 1 in 1000 individuals are affected by the disorder, and men are more often affected. Cluster headaches typically start with sudden, excruciating agony focused on a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.
What connects patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Nevertheless, the failure to organize life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.
Historical healing texts suggest bizarre treatments for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies including bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.
The disorder were only officially classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading experts in treating the condition explain this.
In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a physician looked up his complaints.
Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. 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 calm advisor guided me through oxygen treatment and drugs until the attack passed.
Official guidance 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 choices include verapamil, which reportedly soothes the attacks of well-known people.
But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief bouts with occasional attacks are managed with acute treatment alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.
The official guidance need updating to reflect a
