Unbearable Pain: My Battle Against the Puzzling Pain of Cluster Headaches

It began on a gloomy Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden pain erupted behind my one eye. Then came quick shocks, like lightning bolts. As each class progressed, the discomfort subsided and then returned with greater force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that fall, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense pain around one eye that persists for three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches usually begin with abrupt, severe agony around one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the absence of extended pain-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. Another found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started 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 her youth. Drinking in her teens, like many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

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

Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical healing records suggest unusual remedies for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

The disorder were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured in a major medical publication, showed increased activity 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, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, 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 low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in 2021; a calm advisor talked them through oxygen treatment and drugs until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are managed with abortive therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a