Unbearable Agony: My Struggle Against the Mysterious Pain of Cluster Headache Syndrome
It was a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain sprang behind my one eye. Then came quick shocks, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.
The headaches returned frequently that fall, 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: aura in the morning, early twinges on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often begin with intense pain around a single eye that lasts for three hours.
About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches typically start with sudden, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, defined by the absence of long symptom-free periods.
What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.
One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.
Her family often mistook her episodes as drunken behavior. Understanding eventually 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 relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.
Still, the inability to organize life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.
Historical healing texts propose bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only officially classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.
In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.
Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate treatments.
A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode eased.
National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.
But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are handled with acute therapy only. Longer or more intense 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 cycle – an procedure into the area of the head where the pain is that decreases nerve activity.
The national guidelines need updating to reflect a
