🔗 Share this article

It was a overcast Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my right eye. This was followed by rapid stabs, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe pain around one eye that lasts for three hours.

About 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches usually start with abrupt, severe agony focused on one eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children 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 winning tickets for a significant concert, only to have an episode inside a portable toilet.

---

Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient medical records suggest bizarre treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

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

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 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 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode passed.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short cycles with occasional episodes are handled with acute therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a