🔗 Share this article

It was a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. Then came rapid shocks, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe pain behind one eye that persists up to three hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Attacks usually begin with abrupt, severe agony around a single eye that peaks within a short time and lasts 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 facial perspiration. There exists an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

---

Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Historical healing texts propose bizarre remedies for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only formally recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured 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 pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some people.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Short bouts with infrequent episodes are handled with acute treatment alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined 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 pain is that decreases nerve activity.

The official guidance need updating to reflect a