Unbearable Agony: My Fight With the Enigmatic Pain of Cluster Headaches
It began on a gloomy Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain erupted behind my one eye. This was followed by quick jolts, similar to electric shocks. As the school day came and went, the pain subsided and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.
The attacks returned repeatedly that autumn, and once more in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.
This condition often start with severe discomfort around a single eye that lasts for several hours.
Approximately 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Attacks usually start with sudden, excruciating pain around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.
What unites patients is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.
One patient, 74, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her family often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Still, the failure to organize life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who attacked his victims' heads.
Historical medical texts propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.
The disorder were only officially recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the head. Leading specialists in diagnosing the condition explain this.
In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.
Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. 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 advisor guided them through oxygen therapy and drugs until the attack eased.
Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some individuals.
But consultant specialists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short cycles with occasional attacks are managed with acute therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve signals.
The official guidelines need updating to reflect a
