Full-Blown Pain: A Personal Battle Against the Enigmatic Suffering of Cluster Headaches

It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my one eye. It was followed by rapid shocks, like lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort around a single eye that persists up to three hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically begin with abrupt, severe agony around a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. 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 clerical 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 the early 2000s at a specialist hospital.

Still, the failure to plan life around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing records suggest unusual remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

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

The disorder were only officially classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent specialists in treating the condition note this.

In 1998, researchers released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published 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 reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession 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 reassuring advisor guided them through oxygen therapy and drugs until the attack passed.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known individuals.

But consultant specialists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short bouts with occasional episodes are managed with abortive therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a