Unbearable Pain: My Struggle With the Enigmatic Suffering of Cluster Headache Syndrome
It began on a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain sprang behind my right eye. Then came rapid stabs, similar to lightning bolts. As each class came and went, the pain subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.
The headaches appeared repeatedly that fall, and once more in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often begin with severe discomfort behind a single eye that lasts for several hours.
About 1 in 1000 people are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony around a single eye that peaks within minutes 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 face perspiration. There exists an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, like many triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “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 dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.
Still, the failure to organize life around unpredictable pain took its toll. She particularly hated being unable to plan outings, 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 robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.
Ancient medical texts propose bizarre treatments for what some experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more folk remedies.
It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only officially classified 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 issue with a major blood vessel which delivers blood to the brain. Prominent experts in treating the disorder note this.
In 1998, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a doctor researched his complaints.
Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.
A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack passed.
Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some individuals.
But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with infrequent attacks are handled with abortive therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.
The official guidelines need revising to reflect a
