Excruciating Suffering: My Fight Against the Enigmatic Pain of Cluster Headaches
It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain sprang behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.
The headaches appeared repeatedly that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically start with severe discomfort around one eye that lasts for several hours.
About 1 in 1000 people are affected by the condition, and men are more frequently affected. Attacks usually start with sudden, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.
What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like several causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.
Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.
Still, the inability to plan life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented throughout the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.
Ancient medical records propose unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.
Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.
In 1998, researchers released the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
Despite such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.
Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough 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 alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack eased.
Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some people.
But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short bouts with infrequent attacks are handled with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve activity.
The official guidance need revising to reflect a
