Excruciating Agony: My Struggle With the Enigmatic Pain of Cluster Headaches
It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by rapid shocks, similar to lightning bolts. As the school day progressed, the discomfort eased and then returned with increased force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.
The headaches returned frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often start with severe discomfort behind a single eye that persists for three hours.
About one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, severe agony around one eye that peaks 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 red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; others have chronic attacks, defined by the lack of long symptom-free periods.
What unites sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.
One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.
Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, 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 robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.
Historical medical records propose unusual remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.
Cluster headaches were only formally classified by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Prominent experts in treating the disorder explain this.
In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen treatment and medication until the episode passed.
National guidelines on management advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some individuals.
But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short bouts with occasional attacks are handled with abortive therapy only. More prolonged or more severe bouts require preventative medications 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 decreases nerve activity.
The national guidelines need revising to reflect a
