Excruciating Agony: A Personal Struggle With the Puzzling Suffering of Cluster Headaches
It began on a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. It was followed by rapid stabs, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.
The attacks appeared repeatedly that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with intense discomfort behind one eye that persists for several hours.
About one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches usually start with sudden, severe pain around one eye that peaks within minutes 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, drooping eyelids or face perspiration. There exists an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the absence of extended pain-free periods.
What unites patients is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.
Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Still, the inability to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical texts propose bizarre treatments for what some observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more folk cures.
It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.
The disorder were only formally classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Leading specialists in treating the condition note this.
In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a physician researched his symptoms.
Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced the condition 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 thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer guided me through oxygen treatment and medication until the episode passed.
Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some individuals.
But consultant neurologists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief bouts with infrequent attacks are managed with acute therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.
The national guidelines need updating to reflect a
