Full-Blown Suffering: My Fight Against the Enigmatic Pain of Cluster Headache Syndrome
It began on a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my one eye. This was followed by rapid stabs, like lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.
The attacks returned frequently that autumn, and again in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition typically start with severe pain behind one eye that persists for three hours.
Approximately one in 1,000 people suffer by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have chronic attacks, defined by the absence of extended pain-free periods.
What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.
Nevertheless, the inability to plan life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family 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 recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.
Historical healing texts propose bizarre remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only formally recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.
In 1998, scientists published the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a physician researched his symptoms.
Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.
A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an bout in 2021; a calm advisor talked me through oxygen therapy and medication until the attack passed.
National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of well-known people.
But leading neurologists believe the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief bouts with infrequent episodes are managed with abortive treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.
The official guidance need revising to reflect a
