Full-Blown Suffering: A Personal Struggle Against the Puzzling Suffering of Cluster Headache Syndrome

It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. This was followed by rapid jolts, like electric shocks. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense pain around one eye that lasts for three hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; others have chronic attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

Headaches have been described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts propose unusual treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments including bloodletting to other, more folk remedies.

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

The disorder were only formally recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a calm volunteer guided them through oxygen treatment and drugs until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some people.

But consultant specialists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short cycles with infrequent attacks are managed with abortive therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a