Excruciating Pain: My Battle Against the Enigmatic Suffering of Cluster Headaches
It was a gloomy weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp pain sprang behind my right eye. Then came quick jolts, similar to lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.
The attacks appeared frequently that autumn, and again in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with intense discomfort around a single eye that lasts up to three hours.
About one in 1,000 individuals suffer by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.
What connects patients is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.
One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.
Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Still, the inability to organize life around erratic pain 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 family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value 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 account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.
Historical healing texts suggest bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.
The disorder were only formally recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in treating the disorder note this.
In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the a brain region, 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 delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a physician researched his symptoms.
Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the episode passed.
National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.
But leading specialists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Short bouts with infrequent episodes are handled with abortive treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.
The national guidelines need updating to reflect a
