🔗 Share this article

It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation erupted behind my one eye. This was followed by quick shocks, reminiscent of lightning bolts. As each class progressed, the pain eased and then returned with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe pain around a single eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs 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 rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like several causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist 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 flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Historical healing texts propose unusual treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially classified by global medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent specialists in treating the condition note this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed activation 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, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.

National guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short cycles with occasional episodes are handled with abortive treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a