Excruciating Suffering: My Battle Against the Puzzling Pain of Cluster Headaches
It began on a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp pain sprang behind my one eye. Then came quick stabs, similar to electric shocks. As each class came and went, the pain subsided and then returned with greater intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.
The attacks returned frequently that fall, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with severe pain behind a single eye that persists up to several hours.
About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, severe agony focused on a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the lack of extended pain-free periods.
What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.
One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.
Still, the inability to organize daily activities around erratic pain took its toll. She especially disliked 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 liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.
Ancient medical records propose bizarre treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.
It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only officially classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading specialists in treating the disorder explain this.
In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a physician researched his complaints.
Specialists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, 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 Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.
National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some people.
But consultant specialists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are managed with acute therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.
The official guidelines need revising to reflect a
