How To Live A Normal-“ish” Life With Vestibular Migraines

January 23, 2019

As an ambassador for VEDA, I receive a lot of emails from other vestibular disorder sufferers about my diet, fitness, and how I live a normal life.

Unfortunately, experiencing the beginnings of a vestibular diagnosis tends to take most of us down the same dark road. It’s easy to lose hope and hard for a lot of us to imagine our “new normal” aside from being a prisoner of your house.

So many people, like me, find themselves in the first few months of their diagnosis afraid to drive, go to work, attend social events and even go to the grocery store.

When you’re feeling dizzy and unlike yourself, the last thing you want to do is put yourself in an environment that makes it worse, especially when it appears to be “inside your head” to your peers.

However, you’re stronger than you know. It starts with finding the right doctors and treatments, but I promise you that you can eventually go back to living a normal-ish life.

After a while, you’ll stop mourning your old life because you can get to a place where it won’t feel like too much has changed.

Seriously, the only thing I haven’t done from my “pre-vestibular migraine life” at this point is go to an amusement park – which eventually I will try and do.

Trust me. You can adapt to your new normal, and I have just the tips to help you along the way.

Try The Heal Your Headache Diet

I’ve discussed the Heal Your Headache book in the past, but this completely changed my life when I was first diagnosed with my vestibular migraines.

Doctors will tell you that there are several factors that cause migraines, but it’s scientifically proven that what you put into your body can have an effect on your brain.

When I was first diagnosed, I removed caffeine, chocolate, foods with MSG (which apparently is everything out there), bread, aged cheeses and meats, avocado, bananas, onions, nuts, beans, figs, raisins, and most alcohol. Yes, most alcohol.

While it seems overwhelming that you have to remove a lot of tasty foods from your diet, it doesn’t have to be. My friend The Dizzy Cook, cooks up delicious recipes that are restaurant worthy.  Plus, all of these foods are proven to have an effect on migraines, so it’s worth trying.

Once the foods have been removed for a few months, you can try and introduce certain elements back into your diet to see how you react.

It’s been almost two years for me now, and at this point, I still try and stay away from foods with MSG and aged cheeses and meats. Those tend to be my triggers, but it’s different for everyone.

I also haven’t had a drop of caffeine since 2016.

Quit Caffeine and Find Tasty Substitutes

My career is in marketing and writing, so most people know that coffee goes hand-in-hand with the job. However, after a while, replacing coffee and teas with decafs have become easy.

I honestly don’t even think about it anymore. Yes, there are some days where I might be more tired, but I’ve found other ways to give me energy.

And as far as decaf goes, I drink Starbucks decaf coffee, and I drink Chamomile teas (which are said to be good for migraines and anxiety.) If I am needing to quench my thirst, I can still drink a Sprite or rootbeer, although I am not a big soda drinker.

It’s hard at first, but removing caffeine from my diet has ulitmately made me feel less anxious, have less headaches and overall feel better.

What’s The Story With Alcohol?

I was diagnosed with vestibular migraines at 27-years-old, so you can imagine what this did to my nightlife. All I knew was that alcohol was clearly what causes hangovers and headaches, so I could kiss it goodbye.

It wasn’t until I (personally) learned that wines that had less sulfites were okay for me to drink. I learned that there are plenty of organic wines and wines with little to no sulfites out there that didn’t give me headaches.

However, it’s important to note that red wine and champagne are a big no-no. While tasty, they tend to have more sulfites in them. Ever wonder why you have a pounding headache after a long day of brunch – champagne can kill.

Wine Brands I Can Tolerate:

  • Bonterra
  • Chateau Laubarit Entre-Deux-Mers, Bordeaux,
  • Paul Dolan Vineyards
  • Kim Crawford

You can also check out these sulfite free wine brands. But like I said, these are what work for me. My friend, The Dizzy Cook, hates how Bonterra makes her feel, but I never have had residual side effects with it.

The same goes for darker liquors and beers. So, if you’re wanting a cocktail, my doctor suggests staying with vodka because it hasn’t been aged as long during its distillation process unlike other liquors.

My favorite go-to cocktail is a Moscow Mule because it has ginger, which is a natural aid to help with dizziness, and vodka. If I’m going the wine route, I usually order a Sauvignon Blanc or Pinot Grigio, because once again, they typically aren’t aged as long as other wines.

(TIP: Go to a wine store and tell the representative that you have migraines. They can usually point out wines that have less additives.)

I get a lot of questions on this topic, so if you have more questions, don’t worry. I plan on doing a post ONLY on alcohol in the near future.

Discovering Your “Invisible Sunglasses”

Have you ever seen Big Daddy? If so, do you remember the part where the kid wears Adam Sandler’s sunglasses so that he feels invisible? Similarly, my blue light filtering glasses do that for me.

When I wear my migraine glasses to big-box retail stores or in an environment that has a lot of flashing lights, it makes my vestibular disorder feel like I have a handle on it.

Prior to wearing my glasses, I wanted to shrivel up in a ball in the middle of the store, but when I pop on my glasses, I feel like the little kid from Big Daddy. Suddenly everything seems okay, and I can make it out in public without having a melt down because of the lights.

For me, my security blanket is migraine glasses, but for others it might be ear plugs or making sure you always have your meds handy. Whatever it is, make sure that you have those on you at all times because you never know when you could have an attack.

Finding Balance While Working Out

I am an active person, and, frankly, working out is what helps me control my anxiety and stress levels. You can imagine how that took a toll on me after vestibular migraines.

For months I couldn’t walk straight, let alone run, which led me to feel depressed about my body. It finally took a weight gain of 10lbs for me to push myself through the dizziness and hit the gym.

It’s important for you to know your limits, but I found what works best for me is yoga, running and controlled weight lifting. If I am having a better day I will incorporate some interval workouts, such as burpees or jump squats, but as I said, I know my limits.

Overall, it took me a few months, but I finally found exercises I was able to do and not have my whole day be ruined by dizziness.

Jumping Back Into Your Social Life

Unfortunately, vestibular disorders are invisible, so it’s going to be hard for your friends and family to remember that you’re dizzy.

With good communication and an explanation of your invisible symptoms, they can hopefully meet you on common ground.

My friends understand my new set of rules for what I could handle in terms of social events.  

  1. I can only go to places with appropriate lighting. The dimmer the better.
  2. Limit the noise. My ears are already ringing, so if it’s loud, I am useless.
  3. Be understanding that I wouldn’t want to go to night clubs or loud bars. (Most are okay with this. We’re older now, anyway)
  4. Be understanding that if I am dizzy, it’s time to go home. (Your true friends won’t make you feel guilty for needing to rest if you’re having a bad day, but at least you went out!)

It takes time, but it’s important to push yourself and not miss any of the fun moments with your friends and family. The more you get out, the better it makes you feel in the long run.

I hope this gives you hope, especially if you were newly diagnosed, that you can eventually achieve your “new normal.” And keep in mind, that what has worked for me, might not work for you.

I think the one thing that I have learned during this journey is that it’s about trial and error, and as long as you keep trying, you will find that it’s worth it in the end!

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5 Comments

  1. Reply

    amymc34

    Thank you so much for the post, Kayla! I am going to share this with my friends and family. I makes me feel hopeful! One question: I want to get the blue light protective glasses you mention, but my ophthalmologist uses a company called Zeiss, not BluTech. Do you think there are big differences in the technology? I don’t want to spend money on something that wouldn’t work as well as what you are using. I also want to avoid having to pay for another exam at a different ophthalmologist. Thanks for all of your posts. They have really helped me!

    1. Reply

      Valerie Manso

      First let me state I work for BluTech Lenses. I am VP of Sales and Education and have been involved in the optical industry since 1973.
      1. Zeiss products are not available in BluTech. Only BluTech Lenses will provide the level of relief experienced by Kayla and many other individuals.

      By law, you may obtain a copy of your prescription from your doctor, and have BluTech eye wear made, using that prescription, by another doctor (Ophthalmologist or Optometrist) or an Optician.

  2. Reply

    Casey Lehner

    Kayla, thank you for you well thought out post. It is hard to actually find well constructed advice out there. I’ve been dealing with a chronic vestibular migraine for 5 months. However they also found a brain aneurysm. Tomorrow they do a cerebrial angiogram to look closer at it. I am getting conflicting advice from my neurologist and neurosurgeon about surgery or not. I can’t find a vestibular, migraine or brain aneurysm organization that will speak to both, nor a blog or YouTube. My neurologist says she has patients that have both that get worse if they do surgery to remove it. However leaving it there is a train wreck of fear every time my face tingles or I get dizzy or double-vision which could also just be the migraine. I am not an old person and tons of life ahead. Just looking for some direction. Since you’re with Veda, wondering if you have access to resources….?

    1. Reply

      Kayla McCain

      Casey,

      Man! That is some scary stuff. I’ve had neurologists tell me conflicting things with my health, too, so I understand that. I have asthma, and a doctor gave me a beta blocker for my migraines, which caused problems with my asthma. I thought that was difficult, but nothing compared to what you’re going through. I would email VEDA and see if they have any contacts they can put you in touch with for this. info@vestibular.org. You can also check out their support list here: https://vestibular.org/finding-help-support

      I will be thinking of you and hope you get this all figured out!!

  3. Reply

    Brenda

    Hi Kayla,

    I’ve just been diagnosed with vestibular migraine after four long years of not knowing what was wrong with me. Thank you for you blog and all the information you give. It’s really helpful and reassuring. I was interested in the Blutech lenses. I was wondering are they available in Europe? I’m from Ireland and can’t seem to find them. Do you need a prescription for them? Or can you just order a pair? Or price them? Thank you

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