Full-Blown Pain: My Struggle Against the Enigmatic Suffering of Cluster Headache Syndrome
It was a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. It was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.
The headaches appeared repeatedly that fall, and once more in spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with severe discomfort around a single eye that lasts for several hours.
About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for as long as 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. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.
What unites patients is the severity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.
Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.
Still, the failure to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.
Ancient medical texts propose unusual remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.
It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.
The disorder were only formally recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent experts in diagnosing the disorder explain this.
In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
Despite such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a doctor looked up his complaints.
Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode passed.
Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known people.
But leading neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.
The official guidelines need updating to reflect a
