Full-Blown Pain: A Personal Fight Against the Puzzling Pain of Cluster Headaches

It was a overcast Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain erupted behind my one eye. This was followed by rapid shocks, reminiscent of lightning bolts. As each class came and went, the pain subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense pain around one eye that lasts up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Attacks usually start with abrupt, excruciating pain focused on one eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks 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 clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around erratic attacks took its effect. 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 children during the incapacitation 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 major concert, only to have an attack inside a portable toilet.

Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Ancient healing records suggest bizarre remedies for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only formally classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short bouts with infrequent attacks are handled with acute therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a