🔗 Share this article

It began on a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my one eye. It was followed by rapid stabs, reminiscent of electric shocks. As each class progressed, the pain subsided and then returned with increased force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

Approximately 1 in 1000 individuals are affected by the disorder, and males are more often affected. Attacks typically begin with sudden, excruciating pain around one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like many causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding 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 attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

---

Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted 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 calm volunteer guided them through oxygen treatment and drugs until the attack passed.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But consultant neurologists believe the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Short bouts with infrequent attacks are managed with acute therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. 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 reduces nerve activity.

The national guidelines need revising to reflect a