Excruciating Agony: My Fight With the Enigmatic Pain of Cluster Headache Syndrome
It was a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation sprang behind my right eye. Then came quick stabs, like lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater force. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.
The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically start with severe discomfort around a single eye that persists up to three hours.
About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Attacks typically start with sudden, severe agony focused on a single eye that reaches its peak 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 face sweating. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.
What unites patients is the severity. One study rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.
Nevertheless, the failure to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs 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 description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil entity who attacked his victims' heads.
Ancient healing texts propose bizarre remedies for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.
It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the brain. Leading specialists in diagnosing the disorder note this.
In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm advisor talked them through oxygen therapy and medication until the episode passed.
National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some individuals.
But leading neurologists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Short bouts with infrequent episodes are handled with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that reduces nerve activity.
The official guidance need updating to reflect a
