Full-Blown Suffering: My Fight With the Puzzling Pain of Cluster Headaches
It was a gloomy weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation bloomed behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.
The attacks returned repeatedly that autumn, and again in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition often begin with intense pain behind a single eye that persists up to several hours.
About 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.
What connects sufferers is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to four percent when they were not in pain.
One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to 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 relatives often interpreted her attacks as drunken behavior. Support finally came from her father 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 condition. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.
Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.
Ancient healing records propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.
It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.
The disorder were only officially recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the head. Leading experts in treating the disorder note this.
In 1998, researchers released the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a physician researched his symptoms.
Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack eased.
Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known individuals.
But consultant neurologists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Brief bouts with infrequent episodes are managed with abortive treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.
The official guidance need updating to reflect a
