🔗 Share this article

It began on a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. Then came rapid jolts, like electric shocks. As each class progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort behind a single eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and men are more often affected. Attacks typically begin with abrupt, excruciating agony around a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; others have chronic attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened 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 transport home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms 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 documented across the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient healing records suggest bizarre treatments for what some observers would classify as a migraine. 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 writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only officially recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Leading experts in treating the condition note this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains delayed. 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 operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with occasional attacks are managed with abortive therapy alone. 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 skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a