Excruciating Suffering: A Personal Fight Against the Mysterious Suffering of Cluster Headache Syndrome
It began on a dreary Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain sprang behind my right eye. Then came rapid jolts, similar to electric shocks. As the school day came and went, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The attacks returned repeatedly that autumn, and once more in spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
This condition typically begin with severe pain behind one eye that lasts for several hours.
About one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Attacks typically begin with abrupt, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; others have chronic attacks, defined by the lack of long pain-free periods.
What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.
Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her attacks as drunken episodes. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Still, the inability to organize life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.
Historical medical records suggest unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more folk remedies.
It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.
The disorder were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent specialists in diagnosing the disorder note this.
In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major journal, 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 progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.
Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen treatment and medication until the episode eased.
National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some people.
But leading specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.
The official guidance need revising to reflect a
