Unbearable Suffering: My Struggle Against the Mysterious Suffering of Cluster Headaches

It was a gloomy weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense pain sprang behind my one eye. This was followed by rapid stabs, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense pain behind one eye that persists for several hours.

About one in 1,000 individuals suffer by the condition, and males are more often affected. Attacks usually start with sudden, excruciating agony around a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing records propose unusual treatments for what some experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published 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. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode eased.

Official guidance on management advise that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are managed with abortive treatment alone. Longer or more intense periods 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 pain is that reduces nerve activity.

The official guidelines need updating to reflect a