Full-Blown Agony: My Fight Against the Puzzling Suffering of Cluster Headache Syndrome
It was a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense pain erupted behind my one eye. Then came rapid stabs, similar to electric shocks. As each class progressed, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.
The attacks returned frequently that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with intense discomfort behind one eye that persists for three hours.
About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Attacks usually start with abrupt, excruciating pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.
What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts during bouts; the number fell to 4% when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.
Nevertheless, the failure to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.
Historical healing texts suggest bizarre remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.
Cluster headaches were only formally classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in diagnosing the disorder note this.
In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a doctor researched his symptoms.
Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features 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 unsuitable therapies.
A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode eased.
National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some individuals.
But leading specialists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short bouts with occasional attacks are handled with acute treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.
The national guidelines need updating to reflect a
