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

It began on a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. Then came rapid shocks, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense pain behind a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often affected. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to plan life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been documented across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical records suggest bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, 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. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs 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 nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen therapy and medication until the episode passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts 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, the treatment window is critical: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are handled with acute treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a