Unbearable Suffering: A Personal Battle Against the Mysterious Pain of Cluster Headache Syndrome

It began on a overcast Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation sprang behind my right eye. Then came rapid jolts, reminiscent of lightning bolts. As each class progressed, the pain subsided and then returned with increased intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that lasts up to three hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks typically start with sudden, severe pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to organize daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, 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 obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

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

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed 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 blood vessel that supplies blood to the brain. Leading experts in diagnosing the condition note this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.

Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some people.

But leading specialists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short cycles with occasional attacks are handled with abortive therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a