🔗 Share this article

It was a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense pain bloomed behind my right eye. Then came rapid jolts, similar to electric shocks. As each class progressed, the pain eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe discomfort behind one eye that lasts up to several hours.

About 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have chronic attacks, characterized by the absence of extended pain-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to plan life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties 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 described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Historical medical records suggest unusual treatments for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.

Official guidelines on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are managed with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a