Life with Vestibular Migraine: Kayla from True Kaylaisms

Life with a vestibular disorder or migraine can be tough. This week I'm sharing interviews from fellow migraine warriors about their lives with chronic illness. #balanceawarenessweek2018 #vestibularmigraine #migrainerelief

I’m kicking off Balance Awareness Week with a series of interviews from fellow vestibular disorder and vestibular migraine warriors in all different stages of healing. They’re sharing their tips and tricks, as well as what they’ve learned from living with this illness. This week is dedicated to raising awareness for these increasingly common disorders, which often go undiagnosed or misdiagnosed. Please consider helping us raise awareness by donating to Kayla’s page at the Vestibular Disorder Association

What’s your name and tell me a little bit about your history with Vestibular Migraine. How did it begin and how were you diagnosed? Are you a fan of your current doctor?

 My name is Kayla McCain and I was diagnosed with vestibular migraines, vestibular neuritis and a tegmen defect of the base of my skull (basically my skull is thin near my ears.) All of these in their own way cause dizziness, but in the beginning created a “perfect storm” as my doctor put it. In October 2016, a night at home watching a scary movie with my husband, turned into a horror well beyond the two-hour rental.  What felt like a panic attack would soon reveal itself as the above diagnosis. A sensation came over me where I felt as if I was sinking into my couch as the room started to spin. My heart began to race, my face became numb, and I lost all control of my balance. Like any sane person, I thought I was having a stroke or a heart attack until I used my rationale to realize I’m a healthy 27-year-old, it had to be something else.

A few weeks went by where I felt as if I had been drinking wine to the point where I couldn’t drive. I was helpless. After months of appointments with several different doctors, I was led to believe I had a Sinus Infection, Benign Paroxysmal Positional Vertigo (BBPV), Superior Semicircular Canal Dehiscence (SSCD), and Multiple Sclerosis – THREE times. (This is why it’s important for doctor’s to be aware of vestibular disorders.) I underwent two CT scans, an MRI, and a full-fledged ear examination – hearing test, vision test, sound check, the works. When those tests came back negative, my ENT introduced me to a condition they believed I had called vestibular migraines. However, they didn’t know much about the condition, so I sought out one of the few vestibular neurologists that treats vestibular disorders, and one happened to be in the Dallas-Fort Worth area. I’ve been seeing Dr. Shin Beh at UTSW for a year and a half now and he has changed my life.

Have you ever tried Vestibular Therapy? If so, did you see any results? What were the drawbacks? 

When I finally was treated by Dr. Shin Beh and Dr. Isaacson at UTSW, they recommended vestibular therapy. I went a few times, but honestly, I felt it was too expensive when other treatments were working for me, including other balance challenging activities such as yoga and running.

How did you get the idea that food and migraine might be connected?

 I was desperate before I found a doctor to diagnose and treat me, so I researched EVERYTHING online. I found the Heal Your Headache book a few months after my first episode and to this day, I credit it to me getting my life back. I am not mainly food triggered like some people, but I did try the diet and slowly introduced things back into my diet to see how it affected me. You just need to know your limits, everyone is different.

Are you on a particular diet to manage your migraines and have you noticed that it helps? What have been the biggest changes you’ve noticed, if any?

 As I said above, I’m not triggered by all the foods in the “Heal Your Headache” book list, but I have not had caffeine for almost two years. Caffeine is a huge trigger for me and while it was hard at first, I don’t miss it.  I also rarely eat aged cheese or meats and will not touch red wine, champagne, or dark liquors. Oh, and MSG. Being diagnosed with vestibular migraines has made me very aware of what I’m putting into my body. I now read labels on everything and if it has a ton of ingredients and contains things like “natural flavors” I try and stay away.

What’s your favorite migraine safe recipe? Do you have any personal recommendations on how to prepare it?

 When I was first diagnosed I bought a book called “The Migraine Relief Diet” by Tara Spencer. (It has nothing on the Dizzy Cook, btw. haha) Anyway, she has a twist on lettuce wraps called “Ginger-Chicken Wraps.” If you didn’t know, ginger is a good natural ingredient to help with dizziness, so this meal has benefits, is delicious and healthy!

Basically, it’s chicken, shredded carrot, jicama, scallion, cilantro, and grated ginger all tossed together and placed on Boston lettuce leaves.

 (Let it be know that Kayla was the one who encouraged me to post the new Chicken “Marsala” recipe right away!)

What has been the biggest hurdle you’ve overcome so far in your path to healing and how did you do it?

I’ve talked about this a lot on my blog, but my career in public relations was killing me. Because we live with an invisible illness, it’s hard for people to believe you’re actually sick. My boss and coworkers lacked empathy and understanding. The stress from my job was causing debilitating dizziness that my doctors said that if I don’t quit, I could end up in a wheel chair. It was REALLY hard for me to do, but I ended up leaving corporate America. I struggled for about six months afterward feeling like I lacked a purpose and the anxiety from that caused more stress, which fed my dizziness. I finally realized that my skill set could easily be something I could do from home and work for myself.

Flash forward to a year, and I’m feeling almost 90% these days. I now have the option to be able to listen to my body. If I’m having a bad episode, I can lay down and step away from my computer screen. I think by removing myself from unnecessary stress is what has ultimately helped me on my path to healing. I know that not everyone has the option or career path to be able to work from home or for yourself, but regardless, learning how to manage your stress is VERY important while you’re trying to heal.  

What do you hope for the future as far as your healing? Do you have a long-term goal for managing your Migraine?

I feel grateful that I’m feeling as great as I do now. I remember reading posts on Facebook when I first experienced all of this about people having VM for 10-20 years when I thought this would go away in 2 months. I was devastated and didn’t know how to cope with the idea of being dizzy for the rest of my life.

 However, like those people, you learn how to manage your disorder and you listen to your body. I think in terms of a long-term goal, I want to make sure that I focus on listening to my body and not ignoring life-stressors. That’s what got me into trouble the first time. Your body tries to get your attention when you’re stressed and if you ignore it, you get slapped in the face with dizziness, and really, who wants to be dizzy 24/7?

If you could give any person who has been newly diagnosed with a vestibular disorder advice, what would you say?  

 Never give up and keep exploring new treatments, because something will help improve your symptoms – even it’s only by 10%. But celebrate that 10% because eventually you’ll improve by another 10% and so on to where you start feeling like yourself again.

 While it might feel like your life is over, it’s not. And while it might feel like you’re alone, I can promise you that you’re not. There are ways to manage this disorder and eventually you will find yourself living in a “new-normal.” You’ll learn a lot about yourself during this journey and meet people who are going through this with you. There’s a wonderful community of people with vestibular disorders and some will become your lifelong friends.

Explaining this to your friends, coworkers, and family can be extremely difficult. Do you feel you’ve been able to manage this well and, if so, how do you do it?

 The problem with an invisible disorder is that, well, it’s invisible. You can try and explain it to your friends and family, but as most of us have experienced, they will forget. We aren’t walking around with a broken arm to remind them. My friends and family know that I say I’m dizzy, but I don’t know how much they understand how it affects you daily.

However, I’ve tried to find YouTube videos of what my vision might appear as when I’m having a bad episode, and that helps. Now some of my friends will get an occasional migraine and empathize with me. I also try to communicate by writing. I just recently posted an article on “9 Silent Symptoms Vestibular Disorder Patients Fight Through Every Day” to help explain it to my peers.

Is there any one product, supplement, device, etc. that you couldn’t live without or that has been an integral part of your healing?

Magnesium is something I take every night, no exceptions along with other vitamins that were prescribed by my doctor. However, the one thing I couldn’t live without are my “Gamer Glasses.” I’m still very sensitive to light and it can make the dizziness unbearable, which is why these glasses are crucial to my healing. My husband even bought me a second pair so that I have one in my purse and one pair at home. But seriously, these glasses were the first step for me to feel like a human again when I first got diagnosed. They were the reason I could go to grocery stores, the mall, restaurants, etc. I highly recommend them or any blue light filter glasses. 

A huge thank you to Kayla for sharing her experience! Kayla is a fellow vestibular migraine warrior and VeDA ambassador. We quickly became e-friends when we discovered we went to the same neurologist and are on similar treatment plans. She made me realize you should always have a buddy who knows exactly what you’re going through. We often text each other about any strange symptoms that pop up and lift each other up when we’re having bad days. You can read her fantastic articles about life with VM at her site (and pick up marketing tips!), True Kaylaisms

Alicia was diagnosed with Chronic Vestibular Migraine in 2016 and has been able to successfully manage her symptoms through medication, supplements, lifestyle changes, and the Heal Your Headache Diet by Dr. David Buchholz from Johns Hopkins. She's the owner of The Dizzy Cook.

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