Excruciating Suffering: My Battle Against the Enigmatic Pain of Cluster Headaches
It began on a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain erupted behind my one eye. It was followed by quick shocks, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.
The headaches returned frequently that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with intense pain around a single eye that persists up to three hours.
Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches 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, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, defined by the lack of long pain-free periods.
What unites patients is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.
Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky 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 attacks. Her definitive identification came in 2002 at a specialist neurology center.
Still, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate 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 across the ages. “The first description 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 sufferers' heads.
Ancient medical texts propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.
It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only formally recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Leading experts in treating the disorder note this.
In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, 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 deactivation when they felt better.
Despite such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.
Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode eased.
Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.
But consultant specialists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Short bouts with infrequent attacks are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.
The national guidelines need revising to reflect a
