Excruciating Suffering: A Personal Fight Against the Puzzling Suffering of Cluster Headache Syndrome
It was a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. It was followed by quick jolts, similar to lightning bolts. As the school day progressed, the pain eased and then returned with increased intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.
The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with intense discomfort around a single eye that lasts for several hours.
About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks usually start with abrupt, severe agony focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the absence of long symptom-free periods.
What unites sufferers is the severity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.
Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.
Nevertheless, the failure to plan life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple 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 facility.
Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.
Ancient healing records propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.
It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.
Cluster headaches were only officially classified by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in treating the condition explain this.
In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in recently, after a physician researched his symptoms.
Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.
A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the attack eased.
National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of some people.
But consultant specialists believe the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the treatment.” Short bouts with occasional attacks are managed with acute therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve activity.
The official guidance need revising to reflect a
