Excruciating Suffering: My Fight Against the Enigmatic Suffering of Cluster Headache Syndrome
It was a dreary weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain bloomed behind my one eye. Then came quick jolts, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.
The attacks appeared repeatedly that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation 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 neurologist and I was given a diagnosis with cluster headaches.
This condition typically begin with intense discomfort behind a single eye that persists for three hours.
Approximately one in 1,000 people suffer by the condition, and males are more often diagnosed. Attacks usually start with abrupt, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.
What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.
One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.
Nevertheless, the failure to plan life around unpredictable pain 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 family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.
Historical medical records suggest bizarre treatments for what some experts would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.
It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.
The disorder were only formally recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. Leading specialists in diagnosing the disorder note this.
In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
Despite such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a physician looked up his complaints.
Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate treatments.
A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and drugs until the attack eased.
National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some people.
But consultant specialists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief bouts with infrequent episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.
The official guidance need updating to reflect a
