Excruciating Pain: My Battle Against the Enigmatic Suffering of Cluster Headaches
It was a overcast weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my one eye. It was followed by rapid shocks, similar to lightning bolts. As each class came and went, the pain subsided and then came back with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.
The headaches returned repeatedly that autumn, and once more in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In late 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 behind one eye that lasts for several hours.
Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the lack of long pain-free periods.
What connects patients is the severity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.
One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to many causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.
Her family often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to organize life around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.
Ancient healing texts suggest bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more folk remedies.
It was a European physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.
The disorder were only formally classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent experts in diagnosing the condition note this.
In 1998, scientists released the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
Despite such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his complaints.
Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.
Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known individuals.
But leading neurologists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short cycles with infrequent episodes are handled with abortive therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.
The official guidelines need revising to reflect a
