Excruciating Suffering: My Struggle Against the Enigmatic Pain of Cluster Headaches

It began on a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. Then came quick stabs, like electric shocks. As the school day progressed, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort around a single eye that persists for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Attacks usually begin with sudden, severe agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been documented throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Ancient medical records suggest bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally recognised by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the brain. Prominent experts in treating the condition explain this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known individuals.

But leading specialists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short bouts with occasional attacks are managed with abortive treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a