Full-Blown Agony: A Personal Battle Against the Enigmatic Pain of Cluster Headache Syndrome
It was a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. This was followed by rapid stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.
The attacks appeared repeatedly that fall, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches often begin with severe pain around one eye that persists for several hours.
About one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks usually start with sudden, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; others have chronic attacks, characterized by the absence of extended symptom-free periods.
What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her family often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a national hospital.
Still, the inability to organize life around unpredictable attacks took its effect. She particularly 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 most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.
Historical healing records propose unusual treatments for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.
It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.
The disorder were only officially recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent specialists in treating the condition explain this.
In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician researched his symptoms.
Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode passed.
Official guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known people.
But leading specialists argue the official guidelines need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief bouts with occasional episodes are handled with acute therapy alone. Longer or more intense periods 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 injection into the area of the skull where the pain is that reduces nerve signals.
The official guidance need revising to reflect a
