My long vestibular diagnosis journey

“Always believe in your own strength.”

Age: 30

Diagnosis: Superior Canal Dehiscence Syndrome (SCDS)

I was 27 years old when my life changed. I had just been in a vehicle accident during Covid and within a few months my vestibular symptoms started to hit me. It felt like my whole world had moved and I was walking on a boat. It made me feel defeated and scared. I was getting dismissed left and right, telling my doctor how I was feeling. He told me it was just anxiety and that I’m depressed. He wrote me a prescription for antidepressants and said I needed to see a shrink.

My body just didn’t feel right. I knew something was wrong. I kept making appointment after appointment and nobody could figure it out. I was scared and felt alone.

I started to experience more symptoms and the anxiety was just making it worse. I stopped driving, I couldn’t eat, I was living in constant fear. I would constantly try to do my own research and came across a support group on Facebook for vestibular disorders. I would see if any of my symptoms matched anyone else’s and I was told about what tests to take to see if my inner ears were working properly. Because it was during Covid, nobody was willing to bring me in to evaluate me except one doctor.

It took almost 4-5 months to get an in person visit. Even after the testing they couldn’t figure it out. I fought hard each day to figure out what was wrong with me.

There was one last test to do. I landed at UCLA Medical Center where they did a CT scan of my temporal bones, and sure enough they diagnosed me with Superior Canal Dehiscence Syndrome (SCDS). I had surgery for it and thought I was entering my healing stages of finally getting my life back, but after surgery I still wasn’t feeling better. I met with a doctor who is familiar with vestibular disorders and got diagnosed with PPPD on top of what I had been dealing with. My doctors at UCLA also diagnosed me with Ménière’s Disease.

My fight isn’t over and I won’t give up. Living life with my symptoms daily is really tough, but I’ve learned to keep going. When your balance is affected, you don’t realize how much balance gets taken for granted. Those who suffer from vestibular disorders, I am here to tell you that you are strong and we will continue this fight together. This invisible illness doesn’t own me, it’s just a part of me. I will always continue to advocate.