Full-Blown Suffering: My Struggle With the Mysterious Suffering of Cluster Headaches

It began on a gloomy Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. It was followed by rapid shocks, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The headaches returned frequently that autumn, and again in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain behind one eye that lasts for several hours.

About 1 in 1000 people suffer by the condition, and men are more frequently affected. Attacks typically begin with sudden, excruciating agony around one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

Still, the failure to plan life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Ancient healing records suggest bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, scientists released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm advisor talked them through oxygen treatment and drugs until the episode passed.

National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some individuals.

But consultant neurologists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional episodes are managed with acute therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a