Unbearable Suffering: My Fight With the Puzzling Pain of Cluster Headaches
It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. Then came rapid stabs, like electric shocks. As each class progressed, the pain subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.
The headaches returned repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition often start with severe discomfort around a single eye that lasts for three hours.
About one in 1,000 individuals suffer by the condition, and males are more often affected. Attacks usually begin with sudden, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.
What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.
Her family often interpreted her attacks as intoxicated behavior. 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 took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.
Nevertheless, the inability to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who attacked his victims' heads.
Historical medical records suggest unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only officially recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent specialists in diagnosing the disorder note this.
In the late 1990s, scientists released the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, 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 deactivation when they felt better.
In spite of such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician researched his complaints.
Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack passed.
Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known people.
But consultant specialists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief bouts with infrequent attacks are managed with acute therapy alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve activity.
The national guidance need revising to reflect a
