Full-Blown Pain: My Struggle With the Enigmatic Pain of Cluster Headaches
It was a gloomy Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain bloomed behind my right eye. This was followed by quick shocks, like electric shocks. As each class came and went, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.
The attacks appeared frequently that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with intense discomfort behind one eye that lasts up to several hours.
Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks usually start with abrupt, severe agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have chronic attacks, defined by the lack of extended symptom-free periods.
What connects patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.
Still, the inability to plan life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining 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 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.
Ancient healing records suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more folk cures.
It was a European doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed 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 thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in treating the disorder note this.
In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a physician looked up his symptoms.
Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode passed.
National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of some people.
But leading specialists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Short cycles with infrequent episodes are handled with acute therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.
The official guidelines need updating to reflect a
