Unbearable Pain: A Personal Battle With the Mysterious Suffering of Cluster Headaches
It began on a overcast weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden pain erupted behind my one eye. Then came quick jolts, similar to electric shocks. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.
The attacks returned frequently that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically start with severe pain around one eye that lasts for three hours.
About one in 1,000 individuals suffer by the condition, and males are more often affected. Cluster headaches usually begin with sudden, excruciating agony around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the absence of extended symptom-free periods.
What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts during attacks; the number fell to 4% when they were pain-free.
Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. 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. Drinking in her teens, like several causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very lucky 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, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Still, the inability to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.
Historical healing texts propose unusual treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.
It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only formally recognised by international headache societies 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 that supplies blood to the head. Prominent experts in diagnosing the condition note this.
In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.
Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has experienced cluster headaches 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 extracted because dentists misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack passed.
National guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known people.
But leading specialists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are managed with acute treatment only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.
The official guidance need updating to reflect a
