Unbearable Suffering: My Fight With the Mysterious Suffering of Cluster Headache Syndrome
It began on a overcast weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my one eye. It was followed by rapid stabs, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.
The attacks appeared frequently that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition often begin with intense discomfort behind one eye that persists for three hours.
About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Cluster headaches usually begin with sudden, excruciating pain focused on one eye that reaches its peak within minutes and lasts 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, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.
What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like many causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the inability to plan daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.
Ancient medical records suggest bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk cures.
It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.
Cluster headaches were only officially recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent experts in diagnosing the condition note this.
In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode passed.
Official guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known people.
But leading specialists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief bouts with occasional attacks are managed with abortive therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.
The official guidelines need revising to reflect a
