I’m kicking off Balance Awareness Week 2018 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 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?
Hi, my name is Liz Bannantine and I was diagnosed with VM in February of 2018. It began when I was sick with a typical cold/flu and had been for a week – I proceeded to go on a trip for a weekend. On the return flight, my ears got very full and would not pop. The next day at work, I noticed I felt really off and began to feel dizzy and faint. I figured it was something to do with my ears, but it felt so incredibly strange to me that I went to the ER. They told me to follow up with an ENT if it didn’t resolved. I saw one ENT who initially suspected VM, but who referred me to an ENT who specialized in vertigo/balance. After a handful of vestibular tests, I was then referred to a neurologist who also confirmed and suspected VM. I then moved home as I was very dependent and anxious about what was happening to me – the symptoms were 24-7 and to varying degrees. I tried 3 different medications to start prescribed by the neurologist, all of which did not work or made them worse. I had not really believed in the diet and was too stressed to want to try it. I finally decided to see a follow up neurologist at Johns Hopkins which was close to home for me. It took forever to get in, but about three months after being home, I finally saw the neuro, who confirmed VM. She started me on the diet, Vestibular Therapy, and a combo of new medication. I am a fan of my new doctor, more so than the first neurologist I saw. The combination of the medication and the diet and lifestyle changes, I think, has really helped me. I am not 100% by any means, but the months following the JHU appointment have seen slow but steady improvements.
Have you ever tried Vestibular Therapy? If so, did you see any results? What were the drawbacks?
I have tried VRT. I made progress over the 4-5 weeks that I completed VRT, however, it took time out of my work day (I work remote) and the driving always triggered me. Leaving the house, as dumb as it sounds, was very stressful and I was usually triggered just going to VRT, so at times it was hard to push through the sessions. Completing at home was much easier. I also did not truly see a let up in my main symptoms until I tried medication/diet changes.
How did you get the idea that food and migraine might be connected?
I got the idea from actually the second ENT I saw who specialized in vertigo and balance issues. He was actually one of my favorite doctors I have ever seen. He suspected vestibular migraine, and while he did not know all that much, he immediately recommended the migraine diet. It was a hard pill for me to swallow and I have to admit, I only eliminated caffeine at that point in time (about two months in to the diagnosis). It took me until about 6 months into the diagnosis to fully commit to the diet. I also learned more about it through research online, and through the Migraine World Summit. I figured, if we are ingesting pills to make us better, why wouldn’t food have the same impact on our bodies?
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? If not, how long will you stick with it before trying something else?
Yes, the Heal Your Headache diet, but a specific handout that was given to me by Johns Hopkins Neuro department. I have noticed that I was able to find caffeine as a big trigger for me. It was really hard at first because the symptoms were just so persistent and 24-7, I truly wondered, how could it be something I’m eating when it’s ALL THE TIME? However, after seeing even slight relief and normalcy with my meds (I started my meds around the same time as the diet), I was able to discern feeling normal from feeling dizzy from a possible trigger. Keeping a diary has been really helpful. I noticed my headaches and head pressure has decreased, along with the overall out of body feeling I get (hard to describe). I will stick with it until I can really nail down all my triggers. Forever if necessary. That’s how awful I felt at one point.
What’s your favorite migraine safe recipe? Do you have any personal recommendations on how to prepare it?
I have really liked the The dizzy cook’s recipes. ☺ I think my favorite so far has been the steak tacos with salsa verde. I also have tried my own cauliflower fried rice with migraine safe ingredients and loved it. Also just in general, I’ve come to loveeee sun butter.
What has been the biggest hurdle you’ve overcome so far in your path to healing and how did you do it?
Wow, there are so many hurdles I feel as though I’ve had to overcome. I think the biggest one was truly accepting this as a diagnosis and learning how to cope every day with it (good or bad). Finding the positives in every day, knowing that I can survive it, and learning that I need to cherish my body and mind and all the changes that it goes through. This was truly a life changing event for me, it made me rethink everything but I believe everything happens for a reason and I will be better for it. If I can survive this, I can survive whatever else life will throw my way.
Is there any person, book, podcast, etc. that has inspired you to be a better advocate for your health?
I think the VEDA foundation, as well as the Migraine World Summit have helped me be a better advocate for my health and my diagnosis/well being. Really educating others (even doctors) on this, and standing up for myself and what I feel/want is something I’ve had to practice and learn how to do, but it is so important. Other online support groups have also helped me such as Facebook and mvertigo.org, however those can be a bit overwhelming at times.
What do you hope for the future as far as your healing? Do you have a long term goal for managing your VM?
I hope that I can return to all the activities I used to do (minus triggers that is) and feel confident that I won’t be limited by VM. I have slowly returned to some things one by one and have been able to leave the house, but learning to be dependent on my own again is a big goal for me. Not being afraid of being alone and knowing that I am the only one who can get myself through this.
If you could give any person who has been newly diagnosed with vestibular migraine advice, what would you say?
Take it minute by minute and day by day. Find what you are grateful for in the everyday, whether it be food on your plate or the roof over your head or even just walking (albeit dizzily) around your house. Also, find a support group. My family has been instrumental to my recovery. Finding people who empathize, care, and want what’s best for you has been crucial to me and my recovery process.
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?
Yes, somewhat well. I start with telling them I have migraine, but I make it known that is not the typical migraine. I am lucky to have friends who listen to me and empathize, as well as a family who gives me a ton of support. I’ve had struggles with some of my family explaining this to them, but I’ve lead them to academic sources and websites to show them truly what this feels like and the science behind it. With coworkers, it can be more difficult, but if they don’t have time to understand I just leave it at the fact that I get migraines.
Is there any one product, supplement, device, etc. that you couldn’t live without or that has been an integral part of your healing?
I use Charlotte’s Web CBD oil (you can also buy at Thrive). This could be controversial, but I have found it to be really helpful it treating my anxiety about my situation even before I started any medications, and during the period when I was not on anything. Also, a neck heading pad from Relax Wraps. Works wonders on my tight neck!
A very huge thank you to Liz for this perspective on someone navigating a new diagnosis. I can not tell you how much I love that I got to e-meet this wonderful woman, and how relatable her experience is. Excited to continue to follow your journey!