🔗 Share this article

It was a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden pain sprang behind my right eye. Then came rapid jolts, like lightning bolts. As the school day progressed, the pain eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain around one eye that lasts for several hours.

About one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually begin with sudden, excruciating agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

---

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

Historical healing records propose unusual treatments for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Leading experts in treating the disorder note this.

In 1998, researchers released the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed 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? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor guided me through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Brief cycles with occasional attacks are handled with abortive therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a