Excruciating Pain: My Battle Against the Puzzling Pain of Cluster Headache Syndrome
It was a dreary weekday 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 quick jolts, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then came back with greater force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.
The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.
This condition often start with severe pain behind a single eye that persists up to several hours.
About one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.
What unites patients is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.
One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.
Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.
Historical medical texts suggest bizarre remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only formally recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Leading experts in diagnosing the condition note this.
In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.
Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen treatment and drugs until the episode passed.
Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options 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 process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are managed with acute treatment alone. Longer or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.
The official guidelines need updating to reflect a
