🔗 Share this article

It was a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden pain erupted behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly 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 predict the routine: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort around a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often affected. Attacks typically begin with sudden, excruciating pain around one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, defined by the lack of long pain-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like several triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical medical records propose unusual remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen treatment and medication until the episode passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant specialists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief bouts with infrequent episodes are handled with acute treatment only. Longer or more severe bouts require preventative medications such as verapamil, 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 decreases nerve activity.

The official guidance need updating to reflect a