Living with Vestibular Migraine: VeDA Ambassador Rochelle

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 supporting 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 Rochelle’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?

Hi! My name is Rochelle Matheson. I was formally diagnosed with VM on Sep 4th, 2014. I have suffered from vestibular issues in varying degrees since I was 10 years old, but did not seek a doctor until I was 26, and received my diagnosis when I was 31. I love my current doctors.

Have you ever tried Vestibular Therapy?

Kind of, and I’ll explain. I actually received my VM diagnosis from a VRT, Michael Schubert at Hopkins. I initially made an appointment with him because he came highly recommend by an audiologist I was seeing, and I was desperate for a diagnosis (I had not received one at that point.) After doing a few initial tests and talking with him at length, he came to the conclusion that I am a sufferer of Vestibular Migraines. He let me know that Vestibular Therapy sometimes helps those with VM, and sometimes it does not, but there is no harm in trying. (This is because VM is not caused by damage to the vestibular nerve that needs to be compensated for; instead the brain is causing the vertigo.) I do VRT exercises more now for the psychological benefits.

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

I was told of the connection between trigger foods and migraines from my doctors & VRT at Hopkins.

Are you on a particular diet to manage your migraines and have you noticed that it helps?

I did the migraine elimination diet to identify my trigger foods, so I try not to cook or eat those trigger foods. However I will admit that my love of food sometimes overrides this diet and then I knowingly reap the consequences. :/

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

The biggest hurdle by far was getting a diagnosis. Knowing is half the battle. My doctor at Hopkins told me that Vestibular Migraine was only recognized as its own specific condition within the past 10 years, and that’s crazy.

Is there any person, book, podcast, etc. that has inspired you to be a better advocate for your health?

Finding out that Vestibular Migraines have only been recognized as its own condition (and therefore taken somewhat seriously by doctors) very recently really has inspired me to be a better advocate for my health and vestibular disorders in general. So I guess you could say that my diagnosis inspired me, and the person who finally provided it for me, my VRT, Michael Schubert.

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

I am hoping for advances in neurological medicine and the study of migraines so there are better solutions (therapies, medicines, etc) for those suffering from them than just avoiding trigger foods and other triggers. My long term goal is to keep doing what I currently do (I take Topomax, magnesium and B-complex, CBD oil, avoid trigger foods, exercise regularly) and hope that my vestibular issues don’t get any worse.

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

Make sure to see a neurologist who is versed on vestibular issues if possible, and read a lot into Vestibular Migraines and how they differ from other vestibular disorders to help understand why you feel the vertigo you feel. Knowledge is power.

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?

I have explained my disorder to many friends, family, and coworkers, but I feel as though the only people who truly understand are fellow vestibular patients. I think that is because there is still such a vast disconnect between the vestibular MEDICAL community (often doctors who have never experienced vertigo, but are very informed on the medical ins and outs) and the VESTIBULAR community (those of us who feel the varying forms of vertigo day in and day out, but don’t have a lot of the medical knowledge to understand why.) This is why I have decided to go back to school to become a VRT myself, because I believe my position as a Vestibular patient will be invaluable to me as a doctor caring for and understanding others who are also suffering.

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

Charlotte’s Web CBD oil for sure. This isn’t specifically for my migraines, but it helps so much with the anxiety that accompanies my vertigo episodes that I cannot be without it. It is a game changer.

Thank you, Rochelle for sharing your experience and for making a huge effort to spread awareness through being a VeDA Ambassador and vestibular therapist in training! 

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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