Excruciating Pain: My Struggle With the Enigmatic Pain of Cluster Headaches
It began on a overcast Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. It was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The headaches appeared frequently that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with severe pain around one eye that lasts up to several hours.
About one in 1,000 people suffer by the condition, and males are more often affected. Cluster headaches usually begin with sudden, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of extended pain-free periods.
What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.
One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.
Still, the failure to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.
Historical healing records propose bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.
The disorder were only formally recognised by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in treating the disorder note this.
In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.
Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the episode eased.
National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of some people.
But consultant neurologists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short bouts with occasional episodes are handled with acute treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.
The official guidelines need revising to reflect a
