Excruciating Agony: My Struggle Against the Mysterious Suffering of Cluster Headache Syndrome
It began on a overcast weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.
The headaches returned frequently that fall, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on agony in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition often begin with severe discomfort around a single eye that persists for several hours.
Approximately 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches typically start with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, defined by the absence of extended pain-free periods.
What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several triggers, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted 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 took office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.
Still, the failure to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value 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 documented 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 malevolent spirit who afflicted his victims' heads.
Ancient healing texts propose unusual treatments for what some observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.
It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only officially recognised by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Leading experts in diagnosing the disorder note this.
In 1998, scientists released the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
In spite of such progress, identification remains slow. Jamie Charteris'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 eventually being correctly identified in 2014, after a physician looked up his symptoms.
Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater education. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack eased.
Official guidelines on management recommend that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of well-known people.
But leading neurologists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short cycles with occasional episodes are managed with abortive treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.
The official guidelines need updating to reflect a
