Excruciating Suffering: My Fight With the Enigmatic Pain of Cluster Headaches

It was a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain erupted behind my one eye. This was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort around one eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Attacks typically begin with sudden, severe pain 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 red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.

Historical medical records propose bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only officially classified by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the attack eased.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are handled with abortive treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a