Excruciating Suffering: A Personal Struggle With the Puzzling Suffering of Cluster Headache Syndrome
It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation erupted behind my one eye. It was followed by quick jolts, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.
The attacks returned frequently that autumn, and again in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically start with intense discomfort around a single eye that persists up to several hours.
About 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches typically begin with abrupt, severe pain around one eye that peaks within a short time and continues 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, drooping eyelids or face perspiration. I have the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What unites sufferers is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.
One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After having alcohol at her school leaving party, she remembers barely 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 lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis 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 attack inside a portable toilet.
Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.
Historical medical records propose unusual remedies for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.
The disorder were only formally recognised by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.
In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. 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 discomfort, and a reduction when they recovered.
Despite such progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician researched his complaints.
Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.
A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode passed.
National guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known individuals.
But consultant neurologists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.
The national guidelines need revising to reflect a
