Excruciating Suffering: A Personal Fight With the Mysterious Suffering of Cluster Headaches
It was a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. This was followed by rapid shocks, reminiscent of electric shocks. As each class progressed, the pain subsided and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.
The attacks returned frequently that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often begin with severe discomfort around one eye that lasts up to three hours.
About 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches usually start with abrupt, excruciating pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the lack of long symptom-free periods.
What unites patients is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the bus home.
Her family often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Nevertheless, the inability to plan life around erratic attacks took its toll. She especially 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 steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.
Historical healing texts suggest bizarre treatments for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.
The disorder were only officially recognised by international medical 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 artery that delivers blood to the head. Prominent experts in diagnosing the condition explain this.
In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured 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 deactivation when they recovered.
In spite of such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack passed.
Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.
But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Short cycles with occasional attacks are handled with acute therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.
The national guidance need revising to reflect a
