Unbearable Suffering: My Battle With the Mysterious Suffering of Cluster Headaches
It began on a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.
The headaches appeared frequently that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often begin with severe pain behind one eye that persists for several hours.
About one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony around a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the lack of extended pain-free periods.
What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.
One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.
Still, the failure to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms 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 facility.
Headaches have been documented throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.
Ancient healing records propose bizarre remedies for what some observers would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.
The disorder were only officially recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Prominent specialists in treating the condition note this.
In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a doctor researched his symptoms.
Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given inadequate therapies.
Dorothy Chapman, in her late seventies, 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 twenties, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen treatment and medication until the episode passed.
Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some individuals.
But leading neurologists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with occasional episodes are handled with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The official guidance need updating to reflect a
