🔗 Share this article

It was a overcast weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by quick jolts, similar to lightning bolts. As the school day came and went, the discomfort eased and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe pain around one eye that persists for several hours.

Approximately 1 in 1000 people are affected by the disorder, and men 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 come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been documented throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical healing texts propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially classified by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority 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 misinterpreted her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Short bouts with occasional attacks are handled with acute therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a