Tom Sayen

Searching for a diagnosis.

Almost every night between 3 and 4 a.m., Tom Sayen is awakened by a piercing, stabbing pain behind his right eye and cheek. Tom immediately gets up, grabs his oxygen mask, heads down to the living room to allow plenty of room to pace around, and hopes the pain will only last an hour rather than the several it often does. Tom calls it his “unwanted alarm clock, and an alarm clock you truly never get used to.”

The unrelenting pain of cluster disease began on April 17, 1967, when Tom was a senior in high school. The pain was so severe that he fainted in the middle of economics class and was sent to the hospital. At the time, he was told he had headaches, given two aspirin, and was told to lay down; but the pain did not subside. In fact, he was so blinded by the pain, fainting, and nausea of his “headaches” that he barely attended his last month and a half of high school.

Doctors continued telling Tom and his parents, who were at a loss for what was happening to their once healthy son, that he had ‘migraines’ and they would go away or that he was stressed because he was a senior in high school and he needed to relax and take aspirin when necessary.

The first year living with cluster disease was an extremely difficult one. Tom’s previous plans of getting ready for college, finding a part-time job, and enjoying the newfound freedom and music (especially The Beatles) of the summer of ’67 were all put on hold due to the severity of his pain. Tom says instead of enjoying the “Summer of Love,” he survived his personal “Summer of Pain.”

Pushing through the pain

Tom began to push forward, attending Montgomery County College and Temple University, majoring in business and communications. Though he often missed classes due to his pain, he managed to work part-time for a hotel chain throughout the five-year period. In 1973, Tom started a full-time logistics management job at a federal agency in Philadelphia, a position he holds to this day.

Tom’s nightly “alarm clock” continued throughout the ’70s and ’80s, visiting countless specialists who continually told him he had ‘headaches’ and he needed to take aspirin and lay down, neither of which relieved his pain. He struggled to make sense of his pain, to cope with it, and find out what exactly was going on. The pain wasn’t going away and he didn’t know how much longer his body could take the blinding pain he continually faced. Throughout the ’80s, Tom struggled with his purpose in life and wondered if his pain was going to continue to control his entire life.

Tom’s persistent personality shone through in 1988 after he heard a radio ad for a National Multiple Sclerosis Society walk taking place in Philadelphia. He decided to give back as a way to thank God for keeping him alive despite the unrelenting, blinding pain he continued to endure. His pain provided him with a new perspective of the world and he wanted to help others who, too, experienced disability.

Although he has no familial ties to multiple sclerosis, Tom has been an avid volunteer with the MS Society since 1992, doing everything from setting up rest stops and cooking hot dogs at fundraising events to being their backup photographer. When asked why Tom chose to begin volunteering for the MS Society, he remarks, “You can either do nothing or you can do something; I choose to do something.”

Tom’s charity and mentorship continues beyond the MS Society; from his work with numerous headache foundations, he has found multiple ways to give back to the community. In fact, Tom’s charitable work and desire to help others led to proper diagnosis and treatment in 2015. Tom was attending the National Headache Foundation’s annual benefit when he learned of a clinic in Chicago founded by a world-renowned headache specialist. Still being treated for chronic migraine disease, Tom made an appointment to see if they had any other ideas to manage his care.

48 years later

After 48 years, and having tried over 70 different medications to treat migraine, Tom was properly diagnosed with chronic cluster headache. While having a proper diagnosis did not make his pain any less severe, he finally had an answer. He began breathing exercises, practicing mindfulness, and physical fitness.

In 2017, he attended his first Clusterbusters conference and saw a hands-on demonstration of high-flow oxygen therapy to help treat cluster disease. Tom began oxygen therapy in the summer of 2018 and for the first time since 1967, has felt some relief from his cluster disease. “It’s not a cure-all but it does provide relief, which is more than I can say for every other therapy I’ve tried over the previous 52 years,” he explains. There are still nights when he wakes up screaming in pain and tears run uncontrollably down his cheeks; however, he is not ashamed of his pain and how he chooses to deal with it. Tom recognizes that the hardest parts of his life are the ones that have made him into the man he is today.

Advocacy through understanding

Tom is very discreet about his disease. He doesn’t want his colleagues to believe he cannot do an adequate job or to be seen as a burden or liability to his employer. However, he agreed to be a participant for the INvisible Project to continue his advocacy efforts to help others with cluster disease receive a proper diagnosis, find the correct treatment, and provide tips and support for those who also suffer from cluster disease.

Tom notes, “We don’t get enough respect. Cluster is not recognized as a true disease; it is recognized as a malady rather than a serious condition so I will continue to advocate for awareness, understanding, and proper treatment for the younger generation that suffers from cluster disease. I will continue to educate individuals until the necessary tools are provided for all.” He feels he can use the knowledge and experiences of the past 52 years of pain to become the best advocate possible and truly make a difference for future cluster disease patients.

Tom’s ‘Mr. Fix-it’ personality is something right out of the old TV shows he still watches. They remind him of a time in his life he missed out on due to his pain. Tom does not complain about his life or the daily pain he suffers from, but he does wish he had been able to do more before his cluster disease began. Tom explains, “Cluster disease, like any other chronic pain condition, has stolen a part of my life that I won’t get back. It has caused missed opportunities and a good night’s sleep. But, I also believe that the years of suffering severe pain has actually sharpened my brain, improved how I handle situations, and made me smarter, increasing my ability to think clearly.”

Tom’s desire to educate, enhance, and mentor individuals is easily recognizable, from the welcoming smile on his face, to the attention to detail he puts into his work and his volunteering. Tom is a mentor and a coach. His dedication applies to everything from his work to his advocacy.

In 2017, Tom received the “Outstanding Coach and Mentor” award from the Federal Executive Board in Philadelphia. Individuals from 30 different federal agencies in the Philadelphia region were nominated for this honor. While Tom was the recipient, he wasn’t present to receive the honor because he was in Chicago at a National Headache Foundation convention. One of his protégées texted him while he was following his passion to advocate for others. That is the man Tom is: a mentor, an advocate, a survivor, and a friend.