Excruciating Pain: My Struggle Against the Mysterious Pain of Cluster Headache Syndrome
It began on a overcast weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. It was followed by quick 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 teaching assistant 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 frequently that fall, and again in spring, soon establishing an yearly pattern. 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 agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically begin with intense pain behind a single eye that lasts for three hours.
About 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Attacks usually start with abrupt, severe agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, 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 periodic cycles; some patients have continuous attacks, characterized by the lack of long symptom-free periods.
What unites patients is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her family often mistook her episodes as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification 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 unreliable as a colleague, 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 freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.
Ancient medical texts suggest unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Leading experts in treating the disorder explain this.
In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. 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 discomfort, and a reduction when they felt better.
In spite of such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a doctor looked up his symptoms.
Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough 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 verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode passed.
National guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.
But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief cycles with occasional episodes are handled with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.
The official guidelines need revising to reflect a
