🔗 Share this article

It was a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe pain around a single eye that persists up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often affected. Cluster headaches usually begin with sudden, excruciating agony around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol 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 husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical healing records suggest unusual remedies for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

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

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists 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 bout in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode eased.

Official guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of some people.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a