Full-Blown Suffering: My Struggle Against the Mysterious Suffering of Cluster Headache Syndrome
It was a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain sprang behind my one eye. It was followed by rapid stabs, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with greater force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.
The attacks appeared frequently that fall, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often start with intense discomfort behind one eye that persists up to several hours.
Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Cluster headaches usually begin with sudden, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.
What unites patients is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.
Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.
Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national hospital.
Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.
Historical medical texts propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.
The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Leading specialists in treating the condition note this.
In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a major journal, 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, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack passed.
National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known individuals.
But consultant specialists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Brief cycles with occasional episodes are managed with abortive therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.
The official guidelines need updating to reflect a
