Excruciating Suffering: A Personal Fight With the Mysterious Suffering of Cluster Headaches

It was a gloomy weekday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain erupted behind my right eye. This was followed by quick jolts, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks returned frequently that fall, and again in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense pain behind one eye that persists up to several hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently affected. Attacks usually start with sudden, severe agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; others have continuous attacks, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many causes, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children 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 recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been described across history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Ancient medical texts propose unusual treatments for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only formally recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since recent years. 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 Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen therapy and medication until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are handled with abortive therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a