Excruciating Agony: My Struggle Against the Enigmatic Pain of Cluster Headaches
It was a dreary Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. This was followed by rapid jolts, like electric shocks. As each class progressed, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.
The headaches appeared frequently that fall, and once more in the spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically start with intense pain around a single eye that persists for three hours.
About one in 1,000 people suffer by the condition, and men are more often diagnosed. Attacks usually start with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day 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 periodic cycles; some patients have continuous attacks, defined by the lack of extended pain-free periods.
What connects sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit 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 worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often interpreted her attacks as drunken episodes. Understanding finally came from her parent 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 concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.
Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation 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 major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.
Historical healing records suggest unusual remedies for what some observers would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.
It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Prominent experts in treating the disorder note this.
In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
Despite such advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.
Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode passed.
National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some individuals.
But consultant specialists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short cycles with occasional episodes are managed with abortive therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.
The official guidelines need revising to reflect a
