🔗 Share this article

It began on a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain sprang behind my one eye. This was followed by rapid stabs, like lightning bolts. As the school day came and went, the discomfort eased and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared frequently that fall, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

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

About 1 in 1000 individuals suffer by the disorder, and males are more often affected. Attacks usually begin with abrupt, severe pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many triggers, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate 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, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to organize life around erratic attacks took its effect. 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 simple 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 facility.

---

Headaches have been described throughout the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Ancient medical records propose bizarre remedies for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.

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

The disorder were only formally recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced 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 extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a calm advisor guided them through oxygen treatment and drugs until the attack eased.

National guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short cycles with occasional episodes are managed with acute therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a