Full-Blown Suffering: My Fight With the Enigmatic Suffering of Cluster Headache Syndrome
It began on a dreary Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain erupted behind my one eye. Then came quick jolts, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.
The headaches returned frequently that fall, and once more in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches often begin with intense pain around a single eye that persists up to several hours.
About one in 1,000 people are affected by the condition, and males are more often affected. Attacks typically begin with sudden, excruciating agony around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; others have chronic attacks, characterized by the lack of extended pain-free periods.
What connects patients is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were not in pain.
One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.
Still, the failure to organize daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent entity who attacked his sufferers' heads.
Historical healing texts propose unusual remedies for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments including bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.
The disorder were only officially classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Prominent experts in treating the condition note this.
In 1998, researchers published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a physician researched his symptoms.
Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.
National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some people.
But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short cycles with occasional episodes are handled with abortive therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve activity.
The national guidance need updating to reflect a
