🔗 Share this article

It was a dreary weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp sensation bloomed behind my one eye. This was followed by quick stabs, similar to electric shocks. As the school day progressed, the discomfort eased and then came back with greater force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort around one eye that persists up to three hours.

Approximately one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, severe agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken 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 took office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate 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 throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest bizarre remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Prominent specialists in treating the disorder note this.

In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from 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 teeth pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater education. 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 calm advisor talked me through oxygen treatment and medication until the attack eased.

National guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief bouts with infrequent attacks are managed with acute therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a