Excruciating Agony: A Personal Struggle Against the Puzzling Suffering of Cluster Headaches
It was a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. This was followed by quick shocks, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.
The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.
This condition typically begin with severe discomfort behind one eye that persists up to three hours.
About one in 1,000 individuals are affected by the condition, and males are more often affected. Attacks usually start with sudden, excruciating pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the absence of long symptom-free periods.
What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.
One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often mistook her episodes as drunken behavior. 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 took office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.
Still, the failure to organize life around unpredictable attacks took its toll. She especially hated 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 worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning 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 4000BC,” write experts in a book on the subject. They linked the disease to an evil spirit who afflicted his victims' heads.
Historical medical texts propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies including bloodletting to other, more folk remedies.
It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.
The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the head. Leading specialists in treating the disorder explain this.
In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, 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. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a physician researched his complaints.
Neurologists say delays in diagnosing and managing 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 primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack eased.
National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some individuals.
But leading neurologists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the approach.” Brief cycles with occasional attacks are managed with abortive therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.
The official guidance need revising to reflect a
