Excruciating Agony: A Personal Fight Against the Puzzling Suffering of Cluster Headaches
It began on a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden pain bloomed behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As each class progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.
The headaches returned frequently that autumn, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often start with severe discomfort behind a single eye that lasts up to three hours.
About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches typically begin with abrupt, severe agony around one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; some patients have chronic attacks, defined by the absence of long symptom-free periods.
What connects patients is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.
One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the inability to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.
Historical healing texts propose unusual remedies for what some observers would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more folk remedies.
It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.
The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent specialists in treating the condition note this.
In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.
Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.
Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.
But leading neurologists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with occasional attacks are handled with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.
The national guidelines need revising to reflect a
