Unbearable Agony: A Personal Fight Against the Puzzling Suffering of Cluster Headaches

It was a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. It was followed by rapid shocks, like electric shocks. As each class progressed, the discomfort eased and then returned with increased force. 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 paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and again in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort around a single eye that persists up to three hours.

About one in 1,000 individuals suffer by the disorder, and males are more often affected. Attacks usually begin with sudden, severe pain around a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the failure to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

Headaches have been described across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical texts suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only formally recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen treatment and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief bouts with occasional attacks are managed with acute treatment alone. More prolonged or more intense periods 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 side of the skull where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a