Excruciating Pain: A Personal Battle With the Enigmatic Pain of Cluster Headaches

It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp pain sprang behind my one eye. This was followed by quick stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe pain around one eye that persists for three hours.

About one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; others have continuous attacks, defined by the lack of extended symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “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, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis 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 obtaining tickets for a major concert, only to have an episode inside a facility.

Headaches have been described throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing records propose unusual treatments for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

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 a sinus issue; he had four operations before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode passed.

National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a