Unbearable Pain: A Personal Struggle Against the Puzzling Pain of Cluster Headaches

It began on a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain sprang behind my one eye. This was followed by rapid stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with intense discomfort behind a single eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with abrupt, severe agony around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value 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 history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient healing records suggest bizarre treatments for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent specialists in treating the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E 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 has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen therapy and medication until the attack passed.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with occasional attacks are handled with abortive treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a