Full-Blown Agony: A Personal Fight With the Puzzling Suffering of Cluster Headaches

It was a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense pain bloomed behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

Approximately 1 in 1000 individuals suffer by the condition, and men are more often affected. Attacks usually begin with sudden, excruciating pain focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; others have continuous attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Ancient healing texts propose bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by international headache 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 supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen therapy and medication until the attack passed.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of some individuals.

But leading neurologists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with acute treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a