Excruciating Agony: A Personal Battle With the Mysterious Suffering of Cluster Headaches

It began on a overcast weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the pain subsided and then returned with increased intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain around one eye that persists up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Attacks usually begin with sudden, excruciating pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the failure to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical records suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches 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 issue with a major artery that delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated 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 complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode passed.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some individuals.

But leading specialists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with infrequent attacks are managed with acute treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a