Excruciating Suffering: My Fight Against the Puzzling Pain of Cluster Headaches

It was a dreary Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense pain erupted behind my one eye. Then came rapid jolts, like lightning bolts. As each class progressed, the discomfort subsided and then returned with increased intensity. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe discomfort around a single eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the condition, and men are more often affected. Cluster headaches typically begin with abrupt, severe pain around a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic cycles; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed 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 toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

Headaches have been documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical medical texts suggest unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only officially classified by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode eased.

Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief bouts with infrequent attacks are handled with acute treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a