Excruciating Suffering: My Fight Against the Puzzling Pain of Cluster Headache Syndrome
It was a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain sprang behind my right eye. It was followed by quick jolts, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with increased intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.
The attacks appeared frequently that fall, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with intense discomfort around one eye that lasts for several hours.
About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches usually start with sudden, severe pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.
What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.
One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her attacks as drunken episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.
Still, the failure to organize life around erratic attacks took its effect. She especially 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 most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.
Historical healing records propose unusual treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.
The disorder were only formally recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Leading experts in diagnosing the condition note this.
In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.
Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.
A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack passed.
Official guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some people.
But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Short bouts with occasional episodes are managed with abortive therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.
The national guidance need revising to reflect a
