An Unexpected Life Journey

“When you go through deep waters, I will be with you.”—Isaiah 43:2-7

Age: 36

Diagnosis: Persistent Postural Perceptual Dizziness (PPPD)

I had a good thing going. A great life with my husband who I married in 2018, and we had a 9-month old daughter at home when my life forever changed one morning in June 2021, only I did not know this at the time as I had no idea what was going on. My life changed in an instant. Early that morning, I awoke to hard room spinning vertigo. I went on to be diagnosed with BPPV by an ENT. I had the Epley maneuver performed to correct this, however when I sat up, I continued to be severely dizzy, had a horrible pressure across the back of my head, & felt off-balance. It was my vestibular PT who performed the Epley who went on to encourage me to get further testing & see my ENT again. During my follow up visits with an ENT, I demanded a referral to an audiology group for vestibular testing. It was a three week wait to see the audiologists. During that wait, more peculiar symptoms began popping up including severe nausea, smell, noise & light sensitivity, sensations of falling, severe motion sickness, brain fog, thoughts of suicide, anxiety, dizziness at the computer & phone, and insomnia among others.

In August, I was diagnosed with vestibular migraines by the audiology group. When I wasn’t improving much and continued to be dizzy 24/7, I was then diagnosed with Persistent Postural Perceptual Dizziness (PPPD) in September. Not many go on to be diagnosed within a two to three month period, so for that, I am thankful.

During the early months of my journey to find out what was going on with me, others tried to diagnose me as being depressed, just having anxiety, having postpartum depression (PPD), and saying it was just vertigo or still BPPV. Vertigo is a symptom of an underlying condition, & I knew this wasn’t “just vertigo” nor was it PPD. Did I have anxiety?! YES! Because the severe dizziness was causing the anxiety!

It took me seeing my PCP, two ENT offices, the audiology group, three neurologists, & two physical therapists to get to the right doctor who prescribed the right treatment plan for me. I continued to be dizzy 24/7 for eight months until February 2022. Although I still have dizzy days and vestibular migraine attacks, I have mostly better days than worse, which I am very thankful for. The symptoms are much more manageable now.

During all of this, I found it difficult to take care of my daughter without the help of my husband and other family. What was supposed to be the happiest time of my life was interrupted by an unexpected nightmare. It was difficult to complete daily tasks of living such as household chores, cooking, and driving because head movements and body movements were difficult and only made me dizzier. Luckily, I was working from home due to Covid, so I could control my environment, and I didn’t have to drive in a car and be even dizzier and off-balance.

You are your biggest advocate! You know your body and what feels right or not. I am here today, because I pursued & pushed for answers as to what was going on with me. I firmly believe I would not be here had I not kept pursuing, because I knew I could not live in this kind of pain with these debilitating symptoms. If I wasn’t getting anywhere with a health professional, I moved on to the next.

I’m here to share my story and be one of hope to others. I know how isolating this condition can be. Family and friends don’t understand as what they see on the outside is all they see. They see a person. They don’t see or feel the pain or debilitating symptoms you’re experiencing. They think you just “don’t feel good” when you’re actually in the worst pain of your life. It took me reaching out to others on social media to realize there were other people just like me going through the same horrible thing. This is a prime example of the saying “you never know what someone else is going through.” I’ve had to make many lifestyle changes including diet, supplements, exercising, drinking plenty of water, and taking medications, and I now know my limitations due to this illness. I wouldn’t wish a vestibular disorder on anyone. It is a nightmare, and you don’t know if you can survive it. Then, you’re managing the illness the rest of your life. However, do know this disorder does get better with the right treatment plan. We don’t call ourselves ‘Vestibular Warriors’ for no reason!