Unbearable Pain: My Battle With the Puzzling Pain of Cluster Headaches

It began on a overcast Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation bloomed behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then came back with increased force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches returned frequently that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

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

About one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches typically begin with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, 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 arrives in periodic cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things worse. 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 parent and then from her husband, her spouse. “I was very fortunate 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, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to plan life around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children 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 episode inside a facility.

Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Ancient medical records propose unusual treatments for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more folk cures.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists published the results 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 prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do signs 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 centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches 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 dentists misinterpreted her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode eased.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant neurologists believe the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short cycles with infrequent attacks are managed with abortive therapy alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a