“I’ve had all sorts of headaches through the years,” Jim said. Starting in primary school and stretching well into adulthood, Jim’s life was frequently interrupted by migraine, tension headache, and sinus headache. It wasn’t just a personal challenge either; his family also has a history of headache disorders and migraine disease. 

Both Jim’s father and older sister, who recently passed away, suffered from migraine. His mother frequently experienced serious sinus headache attacks, and even his nephew has experienced headache symptoms as well. Jim, unfortunately, would be the only person in his family to face something far more intense—cluster headache. 

Much of the cyclical headache attacks and pain that he felt behind his right eye began in the early 1980s and was different than anything he’d experienced before. “I had no idea what was happening. They’d go away, then they’d return.” After seeing an ENT specialist, he was diagnosed with a deviated septum and was scheduled for sinus surgery. Before following through with the procedure, Jim consulted a headache specialist at a headache clinic in the Bronx, who, 10 years after his symptoms began, told Jim not to bother with having sinus surgery. He informed Jim that he had a classic case of cluster headache.

What followed was nearly three decades of torment. “Brutal, really awful,” said Jim. “Lots of pressure that would move around my head and then transform into cluster headaches once the pressure got behind my right eye.” He said the attacks, which could last up to four hours, came every day at the same time of day (day or night) for three to six months.  

Fortunately, his cycles were episodic, occurring every other year. What stood out the most to him was the unimaginable pain and the relentless day after day rhythm of the attacks. To demonstrate just how painful his attacks were, he described the pain as a “15” on a scale of one to ten. 

The attacks were so severe that, until he discovered an effective treatment, he had to lie down immediately, preferably in a dark room, while pressing a pillow firmly against his right eye to fend off the pain and distract himself. His mother and later his wife would put a damp washcloth on his forehead in an effort to try to provide him with some relief and comfort. During these attacks, the pain was so severe that he was completely immobilized, disturbed by any noise or bright light.  

Some of the worst moments, he recalled, were when a headache struck during a minor league baseball game and again in the middle of a job interview.  In those instances, he had to dig deep and “gut it out.” One of the most painful memories, though, was missing sitting Shiva for his mother when she passed away, nearly missing her funeral because of an excruciating headache that day.