Excruciating Pain: My Struggle Against the Puzzling Suffering of Cluster Headache Syndrome
It began on a overcast weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation erupted behind my one eye. Then came quick shocks, like electric shocks. As each class progressed, the discomfort subsided and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.
The headaches appeared frequently that autumn, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition often start with severe discomfort behind one eye that persists up to several hours.
About one in 1,000 people are affected by the disorder, and men are more often affected. Attacks typically begin with sudden, severe pain around one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.
One patient, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many causes, 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 mistook her episodes as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.
Historical healing records suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.
Cluster headaches were only officially classified by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in treating the condition note this.
In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a doctor researched his complaints.
Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.
Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known people.
But consultant neurologists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Short cycles with occasional episodes are handled with acute treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.
The official guidance need revising to reflect a
