Excruciating Pain: My Battle Against the Puzzling Suffering of Cluster Headaches
It began on a overcast 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 rapid shocks, like electric shocks. As each class progressed, the pain subsided and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.
The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with severe discomfort around a single eye that persists up to three hours.
About one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating pain focused on a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; others have continuous attacks, characterized by the lack of long pain-free periods.
What connects patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began 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 childhood. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national hospital.
Still, the inability to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant 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 4000BC,” write experts in a book on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.
Historical medical texts suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.
It was a European physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.
The disorder were only officially recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Leading specialists in diagnosing the disorder note this.
In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
In spite of such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.
Specialists say delays in diagnosing 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 eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.
Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.
But leading specialists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short cycles with infrequent episodes are managed with abortive therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.
The national guidelines need revising to reflect a
