🔗 Share this article

It began on a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. Then came quick stabs, like lightning bolts. As the school day progressed, the pain eased and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind a single eye that persists for several hours.

About one in 1,000 individuals suffer by the condition, and men are more often affected. Cluster headaches usually start with sudden, excruciating pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support 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 clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She especially 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 incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

---

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

Ancient healing texts suggest unusual treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, 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 deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the attack passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading specialists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Short bouts with occasional attacks are handled with acute treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a