Full-Blown Pain: A Personal Battle With the Enigmatic Pain of Cluster Headaches

It was a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense sensation erupted behind my one eye. Then came quick shocks, like lightning bolts. As each class progressed, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort behind one eye that persists for three hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually begin with sudden, severe pain around one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic cycles; others have chronic attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple 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 portable toilet.

Headaches have been described throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient medical records suggest unusual treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally 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 major blood vessel that delivers blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

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,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, 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 arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority 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 dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode passed.

National guidelines on management advise that sufferers are offered high-dose oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a