Excruciating Suffering: My Battle With the Enigmatic Pain of Cluster Headache Syndrome
It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my right eye. Then came rapid stabs, similar to electric shocks. As each class progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.
The headaches returned repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the train, full-on pain in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.
This condition often start with severe discomfort behind a single eye that lasts for three hours.
About one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks usually start with sudden, severe pain focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.
What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.
Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.
Historical healing records propose unusual remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a European physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.
The disorder were only formally recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Leading specialists in diagnosing the disorder explain this.
In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a doctor researched his symptoms.
Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession 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 early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode passed.
National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some individuals.
But leading neurologists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Short bouts with occasional episodes are managed with abortive therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.
The national guidance need revising to reflect a
