Excruciating Suffering: My Battle Against the Enigmatic Suffering of Cluster Headaches
It began on a overcast Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. Then came quick stabs, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back 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 aspirin, but the pain remained unrelenting.
The attacks appeared repeatedly that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with severe pain around a single eye that lasts for three hours.
About 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically begin with abrupt, excruciating pain focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.
What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to many causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her family often interpreted her episodes as intoxicated behavior. Support eventually came from her father 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 hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.
Still, the failure to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as flaky 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 liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described throughout the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.
Ancient healing records propose bizarre remedies for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments including bloodletting to other, more folk remedies.
It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.
The disorder were only formally classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in diagnosing the condition explain this.
In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major 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 felt better.
Despite such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a physician researched his symptoms.
Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion 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.
Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack passed.
Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known individuals.
But consultant neurologists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief cycles with infrequent attacks are handled with acute therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.
The official guidance need revising to reflect a