Unbearable Pain: My Struggle With the Puzzling Suffering of Cluster Headache Syndrome

It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain erupted behind my one eye. Then came quick stabs, like lightning bolts. As each class progressed, the discomfort eased and then came back with increased intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the train, full-blown agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort around a single eye that lasts up to several hours.

About 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks usually start with sudden, severe pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been documented across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical medical texts suggest bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only officially recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Leading specialists in diagnosing the condition note this.

In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode passed.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Short bouts with occasional episodes are managed with acute treatment alone. Longer or more severe periods require preventives such as certain drugs, 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 skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a