Excruciating Suffering: My Struggle With the Enigmatic Suffering of Cluster Headaches
It began on a overcast weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation bloomed behind my right eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then came back with increased intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.
The headaches appeared frequently that autumn, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with severe discomfort behind one eye that lasts for three hours.
About one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks usually begin with sudden, excruciating agony around a single eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; others have continuous attacks, defined by the absence of extended symptom-free periods.
What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.
Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.
Her family often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “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, in part due to time off during episodes. Her definitive identification came in 2002 at a national hospital.
Nevertheless, the inability to organize life around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been described throughout the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.
Ancient medical texts propose unusual treatments for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Prominent experts in treating the disorder note this.
In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in recently, after a physician researched his complaints.
Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars 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 Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode eased.
National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known people.
But leading neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Short bouts with occasional episodes are handled with acute therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.
The national guidance need updating to reflect a
