🔗 Share this article

It began on a overcast Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my one eye. It was followed by rapid shocks, similar to electric shocks. As each class came and went, the pain subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and again in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense pain behind a single eye that persists up to three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating agony focused on one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; others have continuous attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation 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 remembers winning tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient medical records propose bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only officially classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen therapy and medication until the episode passed.

National guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief cycles with occasional episodes are handled with acute treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidance need revising to reflect a