Excruciating Pain: My Battle With the Puzzling Pain of Cluster Headaches
It began on a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain sprang behind my one eye. This was followed by quick jolts, like lightning bolts. As each class came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.
The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.
This condition typically start with intense discomfort behind one eye that lasts for several hours.
Approximately one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks typically start with sudden, excruciating agony around a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.
What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.
One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her episodes as drunken behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a national hospital.
Still, the failure to organize life around erratic attacks took its toll. She especially hated being unable to plan social events, 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 simple 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 documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.
Ancient medical texts suggest unusual remedies for what some experts would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.
The disorder were only officially classified by international medical committees 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 that supplies blood to the brain. Leading experts in diagnosing the disorder explain this.
In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a doctor looked up his complaints.
Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate treatments.
A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.
National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known people.
But consultant neurologists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Brief bouts with occasional attacks are managed with acute treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.
The official guidelines need updating to reflect a
