Vestibular Migraines Do Not Define Me

Strive not to be a success, but rather to be of value. ~ Albert Einstein

Age: 43

Diagnosis: Vestibular Migraine

Vertigo can be scary. It can come out of nowhere and incapacitate us if we let it. Mine started 8 years ago after a series of 4 sinus infections back to back. I woke up one day and the room was spinning around. I had to walk down the hallway holding on to the wall. I had to sit on the stairs and inch my butt down step by step to get to the couch to watch tv and just lay back down. However, nothing stopped the spinning. I continued to go to work and had a friend drive me for 3 weeks until it had subsided. However, I kept getting flare ups and driving became difficult on some days.

Over the course of a year I saw an ENT and was first diagnosed with BPPV. So they sent me home with instructions on how to do the Epley Maneuver. That didn’t work. A month later I went back and they did a hearing test and a VNG (videostagmography). This test measures types of involuntary eye movements. After the VNG they still thought I had BPPV but gave me prednisone as well in case I had Vestibular Neuritis.

The VNG results showed that my right vestibular nerve that runs to my right ear was barely functioning due to some sort of trauma or injury and so since they cannot do a culture of the inner ear we can only speculate what caused that. So since nerves do not regenerate or heal themselves due to this type of injury, I am left with my left side of my body always compensating for my right side.

After taking prednisone which didn’t help, along with meclizine to help with symptoms I was back at the ENT and had to do another hearing test. My hearing was perfect every time they tested me yet they diagnosed me with Meniere’s Disease and told me I needed to go on a low sodium diet. This meant no more than 2300 mg of sodium a day. I tried this for 3 months and nothing changed. My vertigo wasn’t as severe, I’d say it had gotten better and became more of a moderate vertigo.

When that didn’t work I was sent to an ear specialist who immediately confirmed I had Vestibular Migraine Disorder. So I was given some medication and when that failed he referred me to a neurologist who confirmed the same diagnosis. We tried different medications with no luck. Finally, he sat me down and said…”I know you want a magic pill however I don’t have one. These episodes will come and go. You may have this forever or you may grow out of it in 25-30 years it just depends on the person. Your episodes could last weeks or a few days or a few hours. Known triggers are stress and change in barometric pressure but even then they are still unpredictable.”

You would think hearing that would be earth shattering but honesty it was comforting. At least I had an answer. And I could move on from there knowing I had done everything I could, or did I?

So what did I do? I lived a sedentary life blaming everything on this new me diagnosed with vestibular migraines. I said I couldn’t do anything physical anymore and I might as well eat whatever I want because this is my life now. I lived out of fear and allowed it to consume me. I had let myself believe I would never be the same ever again.

Fast forward about 5 years and one day my husband said…let’s go for a walk together. I will go slow and if you are uncomfortable we can rest. From there it moved to yard work. Planting, digging holes for plants, moving rock, building a dry creek bed, and I started to forget I had Vestibular Migraines. And I was off the couch and moving and it felt so good.

I remember something that was said to me from a spiritual mentor “Vestibular Migraine is not Jennifer and Jennifer is not Vestibular Migraine” meaning….this does not define you.

Vestibular Migraines do not define me, so I fight, I keep moving, I implement nutrition that helps me improve, and I implement exercises to challenge myself. Fast forward to today and losing almost 50 lbs I can honestly say….you can live a life rebalanced.

How did I do this?

The first step was my mindset. I was so convinced my “old” life was gone. No more working out, no more fun, no more enjoying life. I had to flip the script and remind myself that I could do anything if I believed.

You see what we continually tell ourselves and the thoughts that we continually focus on become our beliefs, and our beliefs become truths. So instead of feeding ourselves with negativity, turn it around. Instead of “ I can’t do this”, it’s “I can do this with modifications”.

I had watched a girl on Instagram do a workout I thought I could do with my disorder so I reached out to her. Little did I know she would become my mentor, my coach, and now my friend (and we have never met in person to this day).

Next was my nutrition, I started to journal what I was eating and how it triggered my mood and realized the better I ate, the better I felt, and the more energy I had.

Vestibular Migraines and vestibular Disorders are real. They create confusion, anxiety, doubt, and fear. But we can choose to allow it to define us or get back up and keep moving.

Break the thought process.

I’m not saying that you just choose to believe you no longer have this disorder, but we can choose how we react and how we think about the process to a life re-balanced, whatever that looks like for each person. I chose to believe I could overcome my sedentary lifestyle, and I chose to overcome fear while still living WITH vestibular migraines.

Last I had to give myself grace on the days I fell short of what I wanted to accomplish. Living with guilt over food, or feeling tired because my body is constantly trying to balance itself, or taking a nap instead of getting my body moving was huge for me.

We have to listen to our bodies. Do what you can and attempt to push hard and show up but have grace for yourself if your body is saying “not right now”…notice I didn’t say your body is saying “no”.

In the grand scheme of life this is all temporary and this too shall pass. So, show up for yourself. YOU ARE WORTH IT.

Not everything you see is rainbows and butterflies. You can’t see my body trying to stop the spinning, and you can’t feel it either. But I can. And I believe the struggle is real. But I have things to do and I’m about to dig deep and trust and believe I got this.

Since I’ve found a life re-balanced I now coach others to do the same. I became a health and fitness coach and my passion is to raise awareness, and instill courage into those who are at ANY stage of their journey. VeDA did that for me. They gave me courage and support when no one else knew or believed me when I tried to explain what was wrong with me. They were my voice, and now I want to be YOUR voice so you can be the voice to someone else.