Full-Blown Agony: My Battle Against the Puzzling Suffering 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 intense sensation sprang behind my one eye. Then came quick stabs, similar to lightning bolts. As the school day came and went, the pain eased and then returned with greater force. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.
The attacks returned frequently that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often begin with intense pain behind one eye that lasts for several hours.
About one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What unites patients is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.
Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Nevertheless, the failure to organize life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been described across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.
Ancient medical records propose unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more folk remedies.
It was a European physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading specialists in treating the condition note this.
In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor researched his complaints.
Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode passed.
National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known people.
But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short bouts with infrequent episodes are managed with acute treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The official guidelines need updating to reflect a
