🔗 Share this article

It began on a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my right eye. This was followed by quick shocks, like lightning bolts. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort behind a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; some patients have continuous attacks, defined by the absence of long pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe 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 attack inside a portable toilet.

---

Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Ancient medical records suggest bizarre remedies for what modern observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day 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. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack eased.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief bouts with infrequent attacks are handled 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 nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a