Unbearable Pain: My Struggle Against the Enigmatic Pain of Cluster Headache Syndrome

It began on a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain erupted behind my one eye. Then came rapid shocks, similar to lightning bolts. As each class progressed, the pain subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain around one eye that persists for three hours.

About 1 in 1000 people are affected by the disorder, and men are more often diagnosed. Attacks typically start with sudden, severe agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the inability to organize life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst 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 facility.

Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Ancient healing texts suggest unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Prominent specialists in treating the condition explain this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks dentists 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 bout in 2021; a calm advisor talked me through oxygen treatment and medication until the attack passed.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of some individuals.

But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with abortive therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a