Excruciating Agony: My Battle Against the Mysterious Pain of Cluster Headaches

It began on a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation erupted behind my one eye. Then came rapid shocks, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain behind a single eye that persists up to three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often affected. Attacks usually begin with abrupt, severe agony around one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, 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 liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Ancient medical records suggest bizarre remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.

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

Cluster headaches were only officially classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some people.

But leading specialists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a