🔗 Share this article

It was a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. This was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

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

About 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks typically begin with sudden, severe agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted 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 office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small 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 facility.

---

Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient healing texts suggest unusual remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief bouts with occasional attacks are handled with abortive therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a