Excruciating Agony: My Fight Against the Enigmatic Pain of Cluster Headaches

It was a gloomy weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by quick shocks, similar to lightning bolts. As each class progressed, the pain subsided and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort behind a single eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks usually start with sudden, severe pain around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. 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 symptoms deteriorated through her youth. Alcohol in her teens, like several causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the failure to organize life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing texts suggest bizarre treatments for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. 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 underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short bouts with occasional attacks are managed with acute treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidance need updating to reflect a