Unbearable Pain: A Personal Struggle Against the Enigmatic Suffering of Cluster Headache Syndrome

It was a dreary weekday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. Then came quick jolts, like electric shocks. As the school day progressed, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense discomfort around a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches typically start with abrupt, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like many triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. 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 plan life around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate 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 described throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient healing records propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only officially classified by global 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 blood vessel that supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided them through oxygen treatment and drugs until the attack passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of some people.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief bouts with infrequent episodes are handled with abortive therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The national guidance need revising to reflect a