Unbearable Pain: My Fight With the Puzzling Suffering of Cluster Headaches
It was a overcast weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation erupted behind my one eye. Then came quick jolts, like lightning bolts. As each class progressed, the pain eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.
The headaches appeared frequently that autumn, and again in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often start with intense discomfort around one eye that lasts for several hours.
About one in 1,000 people suffer by the condition, and men are more often diagnosed. Cluster headaches typically start with sudden, severe pain focused on one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, defined by the absence of long symptom-free periods.
What connects sufferers is the intensity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.
One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several causes, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Nevertheless, the failure to plan life around unpredictable attacks took its toll. She particularly 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 paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value 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 history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.
Ancient healing texts suggest bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.
Cluster headaches were only formally recognised by global medical committees in the late 1980s. 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. Leading experts in treating the disorder explain this.
In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a doctor researched his symptoms.
Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.
Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.
But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Short bouts with occasional episodes are handled with acute therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.
The official guidelines need updating to reflect a
