Unbearable Pain: My Fight Against the Mysterious Suffering of Cluster Headaches
It began on a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my one eye. Then came quick shocks, like electric shocks. As the school day came and went, the discomfort subsided and then returned with increased force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The headaches returned frequently that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with intense pain around a single eye that lasts for three hours.
About one in 1,000 people suffer by the condition, and males are more frequently affected. Attacks typically begin with abrupt, severe pain focused on one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.
What connects patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.
One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Nevertheless, the failure to plan life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate 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 history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical texts propose unusual treatments for what modern observers would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.
It was a European physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.
The disorder were only formally classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Prominent experts in treating the disorder note this.
In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.
Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.
National guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some people.
But consultant specialists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief bouts with infrequent episodes are handled with abortive treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.
The national guidance need updating to reflect a
