Excruciating Agony: My Battle Against the Puzzling Pain of Cluster Headaches
It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my right eye. This was followed by quick shocks, reminiscent of electric shocks. As each class progressed, the pain eased and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.
The attacks returned frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with severe pain behind one eye that persists for three hours.
About one in 1,000 people suffer by the condition, and males are more frequently affected. Attacks usually begin with abrupt, severe pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.
What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.
Still, the inability to plan life around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.
Historical medical texts propose bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.
It was a European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.
Cluster headaches were only formally recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent experts in diagnosing the disorder note this.
In 1998, researchers published the results of a study 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 hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
Despite such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.
Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode eased.
Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known individuals.
But consultant specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Short cycles with infrequent attacks are managed with acute treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.
The national guidelines need updating to reflect a
