Unbearable Agony: My Struggle Against the Puzzling Pain of Cluster Headaches
It began on a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. Then came quick jolts, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The attacks appeared frequently that autumn, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition often begin with intense pain around one eye that persists for three hours.
Approximately 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Attacks typically start with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the absence of extended pain-free periods.
What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the number fell to 4% when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several triggers, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.
Nevertheless, the failure to plan daily activities around unpredictable pain 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 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 winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.
Historical medical records suggest unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.
The disorder were only formally recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.
In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.
Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.
National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known people.
But consultant specialists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief bouts with infrequent attacks are managed with abortive treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.
The national guidance need revising to reflect a
