🔗 Share this article

It was a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. Then came rapid jolts, similar to lightning bolts. As the school day progressed, the pain subsided and then returned with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with intense pain around one eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the condition, and males are more frequently affected. Attacks typically start with abrupt, severe agony focused on one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. 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 condition. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties 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 documented across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Ancient healing records propose unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in diagnosing the condition note this.

In 1998, researchers released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.

National guidelines on management advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short bouts with infrequent attacks are managed with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a