Full-Blown Pain: My Battle Against the Enigmatic Pain of Cluster Headache Syndrome
It began on a overcast Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. Then came rapid shocks, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.
The headaches returned frequently that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically start with severe discomfort behind one eye that persists for three hours.
About 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have chronic attacks, characterized by the lack of long pain-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.
One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks 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 childhood. Drinking in her teens, like several triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Still, the inability to plan life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his victims' heads.
Historical healing texts propose unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.
It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.
The disorder were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the head. Leading experts in treating the disorder explain 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 increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a doctor researched his symptoms.
Specialists 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,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack passed.
Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.
But consultant neurologists believe the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with abortive therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.
The national guidelines need revising to reflect a
