Full-Blown Agony: My Fight With the Enigmatic Pain of Cluster Headaches

It was a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then came back with increased intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the train, full-on agony in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

About 1 in 1000 individuals are affected by the condition, and men are more often affected. Attacks usually begin with sudden, excruciating agony around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

Headaches have been described throughout the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Historical healing records suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a calm volunteer talked them through oxygen treatment and medication until the episode eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known people.

But consultant neurologists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief cycles with infrequent episodes are managed with abortive treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a