Excruciating Agony: My Struggle With the Puzzling Pain of Cluster Headaches
It was a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. Then came quick stabs, like electric shocks. As each class came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.
The attacks returned repeatedly that fall, and again in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition typically start with severe pain around one eye that lasts for three hours.
Approximately one in 1,000 people are affected by the condition, and males are more often diagnosed. Attacks typically begin with abrupt, severe pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have continuous attacks, defined by the lack of long pain-free periods.
What connects sufferers is the severity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were not in pain.
Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her family often mistook her episodes as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from 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 episode inside a facility.
Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.
Ancient medical texts propose bizarre remedies for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk cures.
It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.
The disorder were only officially classified by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Prominent specialists in diagnosing the condition note this.
In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician researched his complaints.
Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an attack in early 2021; a calm advisor talked them through oxygen therapy and medication until the attack eased.
Official guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.
But consultant specialists believe the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short bouts with occasional episodes are managed with acute treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.
The national guidelines need revising to reflect a
