Living with Vestibular Migraine: Jen Discusses “The Treatment Pie”

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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

For Balance Awareness Week 2018, I’m focusing on 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 Jen’s fundraise for 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?

Jen Newens. I had my first wave of vertigo out of the blue in July 2016. It went away, but then I started to get them periodically and they would last several days to two weeks at a time. The brain fog and dizziness got so bad that it was affecting all aspects of my life, including my job and my marriage. I became depressed. I spent the first year seeing all sorts of different specialists: primary care doctor, CT scan (to rule out a tumor), ENT, physical therapist, hearing specialist, and more. I didn’t know what was wrong with me. And none of the doctors seemed to know, either.

I never had any headaches, so no one thought it could be a migraine. One day, I did get a headache—a really bad one—along with the vertigo and I went to see my doctor. Then, the lightbulb went off. She referred me to a neurologist who diagnosed me with VM.

I do like my current doctor, and my neurologist, but I’ve also added a naturopath, psychotherapist, and cranio-sacral worker to my care team. Together, I feel I’m getting better quality care than one of them alone could provide.

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

Briefly. It was more focused on treating BPPV, which is what my doc originally thought I might have. It didn’t help.

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

Lots of research. Facebook support groups. Thedizzycook.com! And my naturopath.

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

I’ve been on HYH since around February. I do think it is helping, but I’m doing it in conjunction with many other things—a low-dose preventative medication, exercise, LOTS of supplements, and a few other things. I wholeheartedly believe in the Treatment Pie that the Migraine Strong Facebook Group touts. Diet is important, but it’s only one wedge of the pie.

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

There’s a recipe in Melissa Clark’s cookbook, Dinner: Changing the Game It’s a whole roasted chicken that you salt the night before, then roast on a sheet pan. Midway through roasting, you add smoked paprika and olive oil–tossed chickpeas* to the pan and roast a bit more until the chickpeas get crispy. (Melissa also adds thinly cut lemon slices, but I leave them out to be Heal Your Headache compliant). At the end, you toss the hot chickpeas and roasting juices with baby kale or arugula. It’s the perfect one-pan meal! If you’re serving others who are not following HYH, you can offer lemon wedges for squeezing at the table.

What has been the biggest hurdle you’ve overcome so far in your path to healing?

That’s easy: staying positive. It’s a battle I fight every day.

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

The Migraine Strong Facebook Group has been a wonderful resource for me. Their positive and supportive approach and dedicated admins make it such a safe, wonderful haven to come to. Their “Treatment Pie” theory is so helpful in keeping me focused on taking a balanced approach to fighting and treating the illness—as much as I wish there was one, there is no magic bullet that is going to fix this disorder.

What do you hope for the future as far as your healing?

I’m having jaw surgery soon, which may or may not help with the VM symptoms. Right now, I’m focused on the short-term goal of healing from that. Later, I will reassess and look at formulating a long-term goal.

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

Treatment Pie. Treatment Pie. Treatment Pie.

The Migraine Strong treatment pie #migrainestrong

Graphic from the Migraine Strong Pinterest Page.

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 and no. People seem to understand sometimes, but then they revert to the old thinking that migraine is just a headache. I have had success letting people know why and how I am suffering, but it’s been challenging to get people to realize that this is a chronic illness and it’s not going to go away. I often hear—even from my parents—“Are your headaches gone?” It’s very frustrating.

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 think it would be exercise. I’m thankful that I am doing well enough to get in a vigorous cardio or strength workout most days. Even on moderately dizzy days, if I can get in a spin or bootcamp class, I do a lot better.

A big thank you to Jen, who inspires me daily!

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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chicken breasts in a pan with cream sauce and tomatoes in a small white dish

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