🔗 Share this article

It began on a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by quick jolts, similar to electric shocks. As each class progressed, the pain subsided and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense pain around a single eye that persists for three hours.

About 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating pain around one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. 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 took clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, 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 small liberties 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 portable toilet.

---

Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical healing records suggest unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen treatment and medication until the attack passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Short cycles with occasional attacks are handled with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a