Unbearable Pain: My Struggle With the Enigmatic Pain of Cluster Headaches
It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.
The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.
This condition typically start with severe discomfort behind a single eye that persists for several hours.
About one in 1,000 people are affected by the disorder, and men are more often affected. Attacks usually start with sudden, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, characterized by the absence of long symptom-free periods.
What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.
One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Understanding 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 took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.
Still, the inability to plan life around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family 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 remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.
Ancient healing records propose unusual treatments for what some observers would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more folk cures.
It was a European physician 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 occurring and disappearing daily at fixed hours”.
The disorder were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent specialists in diagnosing the disorder note this.
In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.
Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.
National guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.
But consultant neurologists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief bouts with occasional attacks are handled with acute therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.
The national guidelines need revising to reflect a