Living W Eagle Syndrome Teacher here - Searching for Others

Hi everyone. My name is Marc, and I’m joining this group because I could really use the support of people who understand what it’s like to live with Eagle syndrome and the uncertainty that comes with it.

For nearly a year, my life has completely changed.

What started as severe pain has become a daily battle with constant head pressure, debilitating headaches, nonstop ringing in both ears, intense pain behind both ears and at the base of my skull, blurred vision, episodes where my vision narrows as though black curtains are closing in from both sides, dizziness, brain fog, overwhelming fatigue, poor sleep, and worsening cognitive problems. I struggle with forgetfulness, finding the right words, remembering things, and just thinking clearly. My symptoms become much worse when I bend forward or move my head into certain positions.

Earlier this year, I underwent a dynamic venogram that showed my right internal jugular vein becoming almost completely blocked in certain head positions. Based on those findings, I was diagnosed with bilateral Eagle syndrome with positional jugular compression.

With those results in hand, I traveled from Oklahoma to the Mayo Clinic with so much hope that I would finally have some clarity. I stayed two extra days and spent well over $2,000 because I believed this would finally be the turning point in my journey.

Instead, I came home with more questions than answers.

The repeat venogram was performed while I was awake because I had started Wegovy only three weeks earlier. I didn’t realize the fasting recommendations had changed, so IV sedation couldn’t be given. Other than a local anesthetic in my wrist, I had no sedation. During the procedure, only two head positions were evaluated. The positions felt awkward and weren’t the natural positions that trigger my symptoms in everyday life. I left feeling that the testing didn’t fully reflect what I experience every day, and that has been very difficult to accept.

I also spent an entire day with the neuro-ophthalmology team. Although my vision testing didn’t identify an explanation, I continue to experience episodes where my vision narrows as though black curtains are closing in from both sides. My tinnitus is nonstop, and the pain behind my ears and at the back of my head is so intense that it often feels like I’ve been hit with a baseball bat.

Since returning home to Oklahoma, my symptoms have continued to worsen. My headaches and head pressure are constant. My cognitive problems continue to increase. My forgetfulness, word-finding difficulties, memory problems, fatigue, and lack of sleep affect every part of my daily life.

I remain on disability because I simply cannot work. I’ve dedicated more than 36 years of my life to education. I hold a master’s degree in Education with an emphasis in Supervision and Instruction, have served as both a classroom teacher and a principal, and have taught every grade from kindergarten through eighth grade. Teaching has never been just a career—it has been my calling, my identity, and one of the greatest joys of my life. Not being able to be in the classroom has been one of the hardest losses I’ve ever experienced.

This illness has also taken a tremendous toll on my personal life. I was engaged to be married, but during this journey my fiancé told me it had become too much and that he was tired of being my support system. Our relationship ended, and I ended up making the trip to Mayo Clinic completely alone. That was one of the loneliest experiences of my life.

Today, I find myself back home in Oklahoma, still searching for answers, still unable to work, and trying to hold on to hope while my symptoms continue. Some days I feel incredibly alone.

I’m not posting because I’m looking for someone to diagnose me or tell me where to go next. I’m here because I need the support of people who understand what this journey can be like. If you’ve experienced similar symptoms, conflicting test results, or simply understand what it’s like to have your life turned upside down by Eagle syndrome, I’d be grateful to hear from you.

Thank you for taking the time to read my story. It truly means a lot to know I’m not alone.

Marc