"Never give up. Listen to your body and take it one day at a time."
My life in 2019 was normal before anything happened. At the time, I was working at a busy Chiropractic office as the lead Chiropractor and at the same time I was an instructor at a college. We were also going through some stressors due to our son getting tested to see if he was in the spectrum. I was always on the go and as a New Yorker, “taking the bull by its horns”. I remember that first incident like is today. It was November 19, 2019 and I was working and just had finished with my last patient before my lunch time. While walking down this long hallway with the patient, I looked up and my whole world went sideways. I saw the floor diagonally, as if a boat was being tilted to the side. I lost my balance and I went into another doctor’s room that day. He looked at me worried and he said to me “are you ok?” and I remember telling him that something was not right. Everything that I looked at looked like static, blurry, and as if I was in a dream. My coworker sees me struggling and tells me to call my husband to take me to the hospital. I started to feel my heart beating fast and panic settling in. Mind you, I had never suffered from anxiety or anything remote to this. I was having my first panic attack ever and I started to worry that maybe I was having a heart attack or a stroke.
At the hospital, doctors just focused on doing tests for my heart, meanwhile I am telling them that I can’t see well, that my eyes are blurry. By that time, I started to present with difficulty speaking. I was never referred to get a CT scan of my head and brain, and I was diagnosed with “angina pectoris”, that I need to “not stress so much” and I was sent home. As a healthcare provider, I knew that something was not right. This came clear to me when I lost my central vision for approximately 15 seconds. I was cooking at home, still with symptoms and when I turn to talk to my husband, I couldn’t see him. I remember panicking and crying telling my husband that I think I might be having a stroke and he took me to another hospital for the second time. At this other hospital, I was left overnight in an observational unit to make sure that it was not a stroke since MRI and MRA of the brain and neck was all cleared. The doctor comes to send me home and I was diagnosed with “vertigo” and to follow up with an ENT. I was diagnosed with a symptom! I was livid!
A few weeks later, symptoms were still present constantly. I had the feeling of being off balance, static vision, blurriness on my eyes, double vision all around. I felt incapacitated and ill all of the time. While this was happening, I never stopped working. Driving for me was not an issue since it made me feel normal, like nothing was wrong, so I did enjoy the car rides, since I felt like me.
When my ENT appointment came, I was first diagnosed with Vestibular Migraine. Me being stubborn, I did not accept my diagnosis since I did not meet the criteria of my symptoms. The way I know this, is because I decided to read the ICHD-3 which is the International Classification of Headache Disorders. It was a struggle since reading made my symptoms worse. At times, I had to make my husband read it for me. At this point, I had followed up with a Neurologist that specializes in migraines and he confirmed what I thought, that I did not have Vestibular Migraines, that it is something else. In my mind, I was thinking, what else can it be since my testing for my inner ear was normal. This neurologist referred me to VRT (vestibular therapy rehabilitation).
I started VRT back in January 2020 and I remember how horrible it was doing my exercises. I kept pushing through because I was so determined to get my normal life back. After 2 months of doing VRT three times a week, I “graduated” and regained my balance back, but I still had visual symptoms. This is when my VRT therapist mentioned to see a Neuro-Optometrist. I went home and looked through the NORA website and found one near me. I remember that I had to fill this questionnaire about my symptoms before scheduling my appointment. The next day, I received a call that I scored really low on the BVD (binocular vision dysfunction) questionnaire and that I should come in for an appointment. I remember telling the office that I will call back to make that appointment and I started to look up what BVD was. To my surprise, I had every symptom listed for BVD. I did not skip one symptom! I remember crying of happiness that now I know what I have and at the same time, I was crying because I wasted so much time and that I could have been feeling better earlier. Before going to see the Neuro-Optometrist that I was referred by my VRT therapist, I found another one that did Vision Therapy. Vision Therapy for me was the missing link that I needed to start feeling “normal” again. I went once a week and did my exercises every day for a whole year. It got to a point where symptoms were 60% better, but I wanted to feel much better than that. I had hit a plateau. That is when I decided to get prism lenses. Prism lenses was the final key for my healing. I remember still having neck pain, upper back pain, anxiety, feeling like walking on a cloud, blurry vision, double vision, static vision, restless sleeps, etc. Once those glasses touched my face, I felt like a weight was lifted off my shoulders. It felt like I could breathe again. I cried so much on my way home. I called my mom and cried. That whole day I spent it crying. I cried from joy, happiness, desperation all of these emotions came flooding down that I just let them out with a good cry.
Like every chronic of invisible illness, it does take a toll in your mental health. My mental health, throughout those first 2 years was horrible. At the age of 36, my life changed completely. I was scared of moving, scared of having a dizzy bout while driving or with my son. I felt useless as a mother and wife. My son needed me, he was so little at the time. I wanted to take him places and do fun things with him, but instead he would see me lay down in the couch or bed, me being sick. There were so many times that I wished to not be in this world anymore and if I would just go away, everything would be fine. I didn’t have to suffer any longer, my family didn’t have to see me suffer. I used to call my mother and cry on the phone and I remember telling her that “I just want to die, I can’t live like this anymore”. My mother would call every day to see how I was feeling and my husband, bless his soul, he would do everything in his power to help me feel better. It was the most grueling two years of my life. My mental health was demolished to dust. One day my husband (who is a chronic pain patient since he was 32 years old), comes into my room and tells me “I know you are hurting and I can’t imagine what you are going through, but think about what I have been through. You need to get up and work harder to get to where you want. Just feeling bad for yourself, is not healthy and it will not take you where you want to be.” That hit me hard because I knew how much physical pain he has been for years and he made the best of it. That changed my mindset completely.
For the past two years I decided to create my podcast and an Instagram account called THE SPINNING CHRONICLES: LIVING WITH A VESTIBULAR DISORDER, where I tell my stories, educate people about vestibular disorders and help people share their journeys. I have taken this horrific experience and decided to spin it into something positive. I have learned so much about vestibular disorders in these past few years and I have accepted the new me. My life now is all with positive vibes and healing energy. I don’t take anything so serious and I spend a lot of more time with my family. This has taught me that life is short and that you will never know when you will have good moments again, so I am taking advantage of this.
At the moment I am feeling 90% better, where I do have flare-ups, but are manageable. I still do my VRT exercises and my vision therapy exercises daily. Think about your brain as a muscle. You go to the gym because you want to lose weight and gain muscle, so you go to the gym and workout. You reach your goal, but if you stop, you can gain your weight all back. The same thing happens with your brain, you need to work it out daily. You want to create those new neural pathways so the brain can rewire itself and help you balance your body out. You will feel horrible at first, but as you keep up with it, you will feel much better.
As a fellow vestibular disorder patient, I can tell you all that it takes time. I know that some of you might think that I am lucky that I was able to find out what is wrong with me and I have my “life” back. My life might be back, but I always have the fear of the unknown. The unknown if it will come back or when will it come back. Is it going to be worse that the first time? Is it going to stay for longer and never leave? But for now, I am enjoying this moment. I know that is hard to believe that you will feel better, but when you get those tiny windows of feeling like “your old self”, take advantage of those days. Keep moving. The more you move, the better and faster the brain will heal and retrain itself. Walk around your house, if you feel safe to do so. Do not suffer alone. There is a big community out there that is willing to help you all.
All I can hope for is to continue to help spread more awareness of vestibular disorders and to have the opportunity to help as much people as I can about these vestibular disorders.