Unbearable Pain: My Struggle Against the Mysterious Pain of Cluster Headache Syndrome
It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain sprang behind my one eye. Then came quick jolts, like electric shocks. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.
The headaches appeared repeatedly that fall, and again in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with intense pain behind a single eye that persists for three hours.
About one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Attacks typically begin with abrupt, excruciating pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.
Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.
Her family often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Still, the failure to plan life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.
Ancient medical records suggest unusual treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments including bloodletting to other, more folk remedies.
It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.
Cluster headaches 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 that delivers blood to the brain. Leading specialists in treating the disorder explain this.
In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.
Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 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 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes 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 attack in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode passed.
Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of some people.
But consultant specialists believe the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts with infrequent episodes are handled with acute therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
