Excruciating Agony: A Personal Battle Against the Puzzling Suffering of Cluster Headache Syndrome
It was a gloomy Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain sprang behind my right eye. This was followed by quick stabs, similar to electric shocks. As each class came and went, the discomfort subsided and then came back with greater force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.
The attacks returned frequently that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the train, full-on pain in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with severe pain around one eye that persists up to several hours.
Approximately one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating pain focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, characterized by the absence of long pain-free periods.
What connects patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.
Her family often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the inability to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate 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 documented throughout history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.
Ancient healing records propose bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.
The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the brain. Leading experts in treating the condition explain this.
In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.
Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth 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. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen therapy and drugs until the attack passed.
National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known people.
But consultant specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Brief bouts with infrequent episodes are handled with acute therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.
The national guidelines need updating to reflect a
