🔗 Share this article

It began on a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my one eye. Then came rapid stabs, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then came back with greater force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain around a single eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks usually start with sudden, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been described across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Historical healing records suggest unusual treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Leading experts in diagnosing the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation 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, identification remains delayed. 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 four operations before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode eased.

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

But leading specialists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the approach.” Brief cycles with occasional episodes are handled with acute therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a