Excruciating Pain: My Struggle With the Enigmatic Suffering of Cluster Headaches
It was a overcast weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation sprang behind my right eye. This was followed by rapid jolts, similar to electric shocks. As each class progressed, the pain subsided and then returned with increased intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.
The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often begin with intense pain behind a single eye that persists for three hours.
About one in 1,000 people are affected by the disorder, and males are more often affected. Cluster headaches typically begin with sudden, excruciating pain around a single eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have continuous attacks, defined by the lack of long symptom-free periods.
What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.
One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.
Her family often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Nevertheless, the failure to plan life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs 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 throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.
Historical medical records suggest bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more folk cures.
It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only formally recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Prominent specialists in treating the condition explain this.
In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a physician researched his complaints.
Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a calm advisor guided me through oxygen therapy and medication until the attack eased.
National guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.
But leading neurologists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Brief bouts with occasional attacks are handled with abortive therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.
The official guidance need updating to reflect a
