Unbearable Agony: My Struggle Against the Enigmatic Pain of Cluster Headaches

It was a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my right eye. Then came quick stabs, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain behind a single eye that lasts for three hours.

About one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Attacks usually start with abrupt, excruciating pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been described across the ages. “The earliest 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.

Historical medical records propose bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only formally recognised by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen therapy and medication until the attack eased.

National guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are handled with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a