Excruciating Pain: My Struggle With the Puzzling Pain of Cluster Headache Syndrome
It was a gloomy Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation erupted behind my one eye. Then came rapid shocks, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.
The attacks appeared frequently that autumn, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically start with intense discomfort around one eye that lasts up to several hours.
About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the lack of extended pain-free periods.
What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache 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, 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 worsened through her youth. Drinking in her adolescence, like several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her attacks as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.
Nevertheless, the inability to plan life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, 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 liberties we don't appreciate until they're gone,” she says. She recalls winning 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 subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.
Ancient medical records propose bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk remedies.
It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.
The disorder were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent experts in treating the condition explain this.
In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.
Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack passed.
National guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.
But leading neurologists believe the guidance need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief bouts with infrequent attacks are handled with abortive treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.
The national guidance need updating to reflect a
