Unbearable Agony: My Struggle Against the Puzzling Pain of Cluster Headaches
It began on a dreary Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. Then came rapid stabs, like electric shocks. As the school day came and went, the pain eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.
The attacks returned frequently that fall, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with severe pain around one eye that lasts up to several hours.
About one in 1,000 people are affected by the condition, and males are more often affected. Cluster headaches typically start with sudden, excruciating agony focused on one eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, characterized by the lack of long symptom-free periods.
What connects patients is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.
One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.
Nevertheless, the failure to plan 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 recalls winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.
Historical healing texts propose unusual remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.
The disorder were only formally classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the head. Leading specialists in treating the condition explain this.
In 1998, researchers published the results of a research project for which they had induced attacks in patients and observed the attacks 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 sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.
Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.
A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen treatment and drugs until the attack eased.
Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.
But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief bouts with infrequent episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.
The national guidance need revising to reflect a
