🔗 Share this article

It began on a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain erupted behind my one eye. It was followed by rapid jolts, like lightning bolts. As the school day progressed, the discomfort eased and then returned with increased intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense pain behind a single eye that lasts up to several hours.

About one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches usually start with sudden, severe agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the inability to plan daily activities around erratic attacks took its effect. She especially hated 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 appreciate 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 history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical medical records suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only officially classified by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with abortive therapy alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a