Full-Blown Pain: My Struggle Against the Mysterious Suffering of Cluster Headaches

It was a overcast Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain erupted behind my right eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

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

This condition typically begin with severe discomfort around a single eye that persists up to several hours.

About 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Attacks usually start with sudden, severe pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the failure to plan daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major 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 authors in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical healing records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading specialists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Short bouts with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a