Full-Blown Suffering: My Battle With 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 group of students, when a intense sensation erupted behind my one eye. This was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain behind a single eye that lasts for three hours.

About 1 in 1000 individuals suffer by the condition, and men are more often affected. Cluster headaches usually begin with abrupt, severe agony around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to plan daily activities around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family 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 significant concert, only to have an episode inside a portable toilet.

Headaches have been documented throughout history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

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

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Leading specialists in treating the condition note this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the attack passed.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant specialists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Short cycles with infrequent attacks are managed with abortive therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a