Excruciating Agony: My Battle Against the Puzzling Suffering of Cluster Headaches
It began on a dreary Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my right eye. It was followed by rapid shocks, like electric shocks. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.
The headaches appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often begin with severe discomfort around a single eye that lasts for several hours.
About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches typically begin with sudden, excruciating agony around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; others have continuous attacks, characterized by the absence of extended pain-free periods.
What connects patients is the severity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.
One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her family often mistook her episodes as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.
Still, the failure to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan social events, 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 simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.
Ancient medical texts propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, 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 headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.
The disorder were only formally recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading experts in diagnosing the condition explain this.
In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a physician looked up his complaints.
Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable treatments.
A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen therapy and medication until the episode passed.
Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some individuals.
But leading specialists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Short bouts with infrequent attacks are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.
The national guidelines need revising to reflect a
