🔗 Share this article

It was a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. This was followed by rapid jolts, like electric shocks. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain behind one eye that persists up to several hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have continuous attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

---

Headaches have been described across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient medical texts suggest unusual treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only formally recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a major journal, 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 advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known people.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief bouts with infrequent attacks are handled with acute treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a