🔗 Share this article

It began on a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. This was followed by rapid stabs, like lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon establishing 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 train, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort behind one eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with abrupt, severe pain focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major 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 Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient medical texts propose bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks 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 helpline during an attack in 2021; a calm volunteer guided me through oxygen treatment and medication until the episode eased.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading specialists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with abortive therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a