One in a million. My battle with Cogan’s Syndrome.

One in a million. My battle with Cogan’s Syndrome.

On January 19, 2017 our son was born; I was 27 years old and my life could not have been any more perfect. I am a planner… an obsessive, compulsive, micromanaging type A planner. Everything I had planned for my life was perfectly falling into line. I was married to the man I loved, we lived in a beautiful home with our little dog, I was teaching social studies at the high school in town and now I was a mama to the sweetest baby boy. Everything was just perfect… until it wasn’t.

In September of 2017 I got sick, thinking it was just cold...I opted to stick to home remedies and cough drops because I was breastfeeding our son. Then in October of 2017 I woke up one morning and something wasn’t right. There was just something pesky in my eye, but I went to work and carried on with my day. After a few hours I could no longer open my eye. After getting an emergency appointment with the optometrist; she told me I had Interstitial keratitis; an inflammatory eye infection. After a few days the infection cleared up and I was good as new, or so I thought. The eye infection kept jumping from eye to eye…. I couldn’t understand it. I was so careful and hygienic. On November 10, 2017 my husband was leaving on a short trip to visit his Army friends for veteran’s day. I wasn’t feeling well, so after putting my son to bed, I went to sleep early. At 3 am when our son woke up crying I popped out of bed like I normally did… but something happened. I couldn’t walk. I couldn’t see straight. Terror struck me… it was like in the movies. Everything was spinning. I couldn’t see straight. I did all I could do to crawl to the bathroom and get to the toilet. After getting sick, thinking it would pass, I crawled to my baby's room and somehow managed to get him out of his crib safely to feed him and put him back to sleep. (Thinking back now… I have no idea how I did that alone… through the grace of God I was able to take care of my son that night.) After taking care of my boy… I tried to get back up and put my self to bed…. But it didn’t work… I spent the next few hours on the bathroom floor… terrified. What was happening? What did I eat? What is wrong with me? At 5 AM I made the call to my father in law and he came to take care of our son. I could not stop getting sick. I could not stop spinning. And my husband wasn’t home. (He was out of town for the weekend to spend Veteran's day with his Army Brothers) For the first time in my life I called 911 for myself and three paramedics came to take me to the emergency room. My husband was on his way back to meet me at the hospital. The ER Doctor gave me a shot and an IV and explained what vertigo was. He said it should subside in a day or so and to follow up with my primary care doctor.

The next few days were a blur… but things only went downhill. The vertigo would not stop, I could not keep food down or even walk on my own. And my ears were ringing and in so much pain, it felt like they were clogged and the pressure was unbearable. And something strange was happening… I could not hear.  After another two days my husband called the doctor again and she told him to bring me to a larger hospital in the next town over that had an ENT in the Emergency Room on call. The ER doctors ran every test and lab, MRI and CT scans but still had no answer so I was admitted. Something in the back of my mind kept telling me to explain to the doctors that I was having those bizarre eye infections, and I showed them the eye drops, but they did not think that it was connected in any way.  This was the first time I had ever been away overnight from our eight month old son, I was now in the hospital… with no answers, alone and scared. After three days in the hospital the doctors still did not have any answers for me and discharged me with follow up appointments. At all of the follow up appointments the doctors kept talking about something called Minear’s disease but they were not convinced that all of the symptoms added up.  After being home for a few days I did what everyone says you should not do…. Google your symptoms. But I knew that there was something that someone was missing. So I Googled…. Vertigo, Ear Pain, Hearing Loss, Interstitial Keratitis….Cogan’s Syndrome. I read every webpage, article and even stumbled my way through medical journal entries comparing my symptoms to the detailed lists provided on the internet about Cogan’s syndrome. I was convinced that it was too close of a coincidence and I called the doctor that day. That phone call changed everything…. I remember speaking to the doctor’s nurse…. I did not want to step on his toes but I just knew in my heart it was worth exploring. The doctor seemed flabbergasted… After doing some research he called me back, and his voice almost sounded scared. “I’m referring you to the Rhumatology and ENT Team at The Ohio State Wexner Medical Center” he said. I was ecstatic that I would finally get some answers. It had now been over a month since I was first rushed to the ER. I could not drive, could not walk on my own and still felt like the entire world was spinning. My whole world seemed to be turned upside down. I could no longer do anything on my own. My husband was now taking care of our nine month old son and his wife. A wife who could not cook and barely clean, who could not even get in and out of the shower by herself. He was driving me to and from work, some days even walking me into the building. He tied my shoes and took care of our son. Finally the time had come to see the doctors at OSU and get answers. I thought the answers would bring me peace, but instead they brought indescribable pain.

On December 19, 2017 I was officially  diagnosed with Cogans Syndrome, an extremely rare inflammatory autoimmune disease which causes vestibular, ocular & auditory audio dysfunction and inflammation of blood vessels. In layman's terms my immune system was attacking my body. The disease caused inflammation in my body specifically in my eyes and ears. The vertigo and dizziness came from the damage to my vestibular system, the part of your ears that controls your balance was essentially being crushed by the inflammation, which also led to substantial hearing loss and the damage caused the loud constant ringing in my ears. The doctors told me that my ears were “dead”. The extreme pressure and pain I was feeling was the insides of my ears being crushed. The irreversible damage had been done. The ocular inflammation and dysfunction was the Interstitial keratitis; that pesky eye infection that kept coming back. The disease also causes vasculitis or the inflammation of blood vessels in the legs and around the heart.  The disease could be managed with anti-inflammatory medications, but unfortunately those medications would come with additional complications. At this point I entered the most uncertain time of my life. The doctors were straightforward and honest. They stated they did not know if I would lose all of my hearing or my eyesight. The doctors could not tell me much, the case studies were few and far between… all because on top of everything else; Cogan’s syndrome was extremely rare… a person only has a one and a million chance of getting Cogan’s Syndrome. 

That year has had its ups and downs filled with countless doctor visits, weekly blood draws, crazy ENG  and VNG testing and over 80 hours of physical therapy. This horrible disease has left me with damaged cochlear nerves, hearing loss and fluctuations which has led to a sweet pair of hearing aids (something everyone in their 20's & 30's wants.. am I right) damage to my central nervous system, spatial disorientation, vertigo attacks, bilateral tinnitus, processing dysfunctions,  and complete loss of my Vestibular functions. The medications have left me with severe bone density loss, hair loss, joint swelling, body pain and the redistribution of fat due to the lipid metabolism leading to extreme weight gain. But through it all I have been incredibly blessed that my ocular nerves were not irreversibly damaged and I have the joy of seeing my son every day, and through the help of my amazing doctors and physical therapists I can now drive, run and even swim with minimal disruption.

Throughout this journey I have learned that even in the darkest of times the Lord my God will never leave me nor forsake me! I have been blessed with the most  amazing supportive family, friends and coworkers; I do not think I would have made it through 2018 without the love and support I received. Even still today in 2023   some days are incredibly hard to get out of bed I know that I am blessed beyond all measure!

Back to blog

1 comment

You are an inspiration to us all. God’s blessings on you and your family.

Tami Sowder

Leave a comment

Please note, comments need to be approved before they are published.