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

It was a dreary Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense pain bloomed behind my one eye. This was followed by rapid stabs, similar to electric shocks. As each class progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

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

About 1 in 1000 individuals suffer by the disorder, and men are more often affected. Attacks typically begin with sudden, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks 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 deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Historical healing records propose bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only formally recognised by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Leading specialists in treating the condition note this.

In 1998, researchers released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

National guidelines on management advise that patients are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading specialists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short bouts with occasional episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a