Excruciating Suffering: My Battle With the Puzzling Suffering of Cluster Headaches
It was a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. Then came quick stabs, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.
The attacks appeared frequently that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition typically start with intense discomfort behind a single eye that persists up to three hours.
About one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.
What connects patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national hospital.
Still, the inability to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties 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 throughout the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.
Historical medical texts propose unusual remedies for what some experts would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.
The disorder were only formally recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent specialists in treating the condition note this.
In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack eased.
National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known people.
But consultant neurologists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief bouts with occasional episodes are handled with abortive treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.
The national guidelines need revising to reflect a
