5 Things I Wish Others Knew About Life with Vestibular Migraine

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A street in Rye with the sun setting

These five things about living with vestibular migraine could really apply to life with any vestibular disorder, and many chronic illnesses in general. As I fly back from my trip to London, I’m thoroughly grateful that there’s been little turbulence and I feel well enough to type on the computer. This is a thought that I never once had before I was diagnosed with Vestibular Migraine. Back then, flying was just another thing I did to get somewhere. Now it’s an epic event where I have to plan out specific seats, perform a ritual of applying EarPlanes and essential oils, and pray I don’t sit next to someone with tons of cologne on. These fears are always tripled when I fly Southwest, even though they’re usually very accommodating.

Although I’m feeling so much better than I used to, it’s still frustrating to me that these things have become a part of my daily life. And while I’ve adapted over time to where most of these become second nature, I can’t help but wish that others knew exactly how I felt having to make all these special accommodations for myself. To have to research menus ahead of time, or take a chance on how I will feel if I don’t know exactly what’s in a restaurant meal…sometimes I don’t want to know!

So here’s my little list of what I wish others knew about living with a vestibular disorder. And perhaps it can help friends and family understand what we go through a little bit better.

A girl in front of kensington palace with a large blue coat

Travel is a Huge Hassle with Vestibular Migraine

Yes, it can be done, but for most of us we have to sit in certain areas of the plane that are less prone to turbulence. A smooth ride is essential when one has extreme motion sensitivity. Although we can’t control the weather, this is the one small part we can do to try to help.

But before we even take our seat on the plane and pull out the little bag of essentials (heaven forbid if we lose or forget the EarPlanes or SeaBands), it’s an exhausting process of navigating crowds, bright lights, and loud noises. If someone bumps into me because they’re not looking, it can easily knock me off balance.

If we’re traveling by car or by train, sometimes the movement of other cars or trains is enough to make us feel like we’re having an Alice in Wonderland experience. On our trip to London, I experienced this while watching another train start to move as we were moving in the other direction. It took a few moments for me to regain my sense of self and I had to make myself look away instead of out the window, which can sometimes help.

I hate the fact that I always do better in the front seat of cars while my long-legged husband will squeeze in the back. I feel selfish when people make accommodations for me like that, but I also know it’s a huge help after a long day of traveling.

We Wish Vestibular Disorders Weren’t an Invisible Illness

One thing I noticed was on trains, people rarely will look at you. Not one person offered me a seat when trains were crowded, most likely because I appear to be totally healthy. Trying to balance yourself with a vestibular disorder can be incredibly challenging and if you’re not carrying a cane or walking device, it’s tough for people to know that it’s helpful to sit.

I even read an article in the UK paper that millennials no longer think it’s necessary to give up their seats on trains, even those who are pregnant or elderly. The article stated that we are moving towards a trend where people find talking on their phones in the train much more rude than not holding the door open for someone. Yet for those of us with vestibular illnesses, these acts of kindness are much appreciated.

Playing Roulette When Eating Out is Annoying

Let’s just clear the air now – migraine diets are annoying. Following a low sodium diet for Meniere’s Disease is hard. And while it’s challenging for family members to feel they have to cater to us, at the same time, we wish it wasn’t this hard. While friends might get frustrated with my migraine triggers if they have us over for a meal, I sometimes have to laugh…I have to navigate this 7 days a week 3 times a day! One meal is a breeze!

Sometimes when I go out to eat, I just want to enjoy myself. This means I don’t ask the waiter about every little thing in my meal or tell them I have a food allergy. In that case, it is a bit like playing roulette. I never know if it’s going to actually be worth the risk. Sometimes I can get away with it and have no symptoms and other times I’m hit hard later that night with a bad attack.

We Want to Work Despite Our Chronic Illness

One of the hardest parts about losing my career to vestibular migraine was that my colleagues would say “oh you’re so lucky” when they found out I was quitting. But I didn’t want to have to quit, I wanted my workplace to acknowledge my illness and help me. Unfortunately they were cruel and even made plans to move me to the worst possible location for my desk while I was out on medical leave.

I wanted to be able to get that promotion I worked so hard for before I got sick, but I also knew my employer would find every excuse to not promote me since I had to miss so much work.

While I love spreading awareness for vestibular migraine, helping others, and creating migraine recipes, I do miss having a livable, steady income of my own. It hits me the most as we begin to look into IVF and I know my medical costs will continue to fall on my husband. And yet I’m lucky to have that support as others are on their own. Often most of us don’t want to be at home, but without the ability to drive safely or the consideration of an employer, it can be really difficult to find a place that will be accepting.

We Want You to Take Interest…Without Selling Us Something

There’s nothing that bothers me more than when someone refers to migraine attacks as “headaches” when I rarely experience head pain. It just shows how little the general public actually knows about migraine in general. Yet it warms my heart when one of my friends corrects the other person with facts they’ve learned over the years. To know that they’re listening to me even when it doesn’t always apply to them makes me feel valuable and understood.

I’ve learned there’s healing in being able to openly talk about health issues. For me, even when my pregnant friends ask questions about my infertility treatments and what these tests or medications all mean, it makes me feel like they really care about what I’m going through. It also allows me to connect with them when I’m feeling left behind.

It’s the same with vestibular migraine or vestibular disorders. We spend hours researching how to get better, what to expect during testing, and what doctors we should see. Openly having a conversation about it can be helpful for both relationships.

The Random Facebook Message

One of the saddest things I experienced after I got sick was the amount of people who messaged me on Facebook or Instagram trying to sell me essential oils, supplements, or a number of products that would “cure me”. I just lost my job and you really see me as a prime person for another sales commission? I’m sure some have good intentions, but most of the time I felt preyed on. If you do sell a product you truly believe will help a friend (and not someone who you spoke to 5 times in college), consider taking a hit on the profit and sending it to them as a gift. They’re vulnerable and struggling, and this way they can try it for themselves to really see if it’s worth making an investment when they’re probably allocating a lot of money to doctors appointments and tests already.

Do any of these apply to you? What’s the one thing that you wish others knew about living with a vestibular disorder?

For Other VM Posts:

The Vestibular Migraine Guide for Dummies
Vestibular Migraine Symptoms
Natural Treatments for VM
The Vestibular Migraine Diet
Traveling with Vestibular Migraine
Visiting Disney World with Vestibular Migraine
Vestibular Disorder Association

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.

7 comments

  1. Lori Laurence

    Yes I used to get these Facebook messages from people who always try to tell me to do some Epley maneuver to quickly cure everything.
    After 16 years of battling vertigo don’t you think I would have tried that by now ?and it does not work by the way.
    I work from home now because I have to and I miss the social atmosphere of working but because my illness is so unpredictable I have to work from home.
    People don’t understand why I can’t shop online because it’s too much scrolling and that’s why I gave up Facebook.
    Yes I wish more people could be more understanding this is a really good article thank you.

    Dizzy Dane in California

    Reply

    1. Alicia

      Thanks for sharing your experience. Some comments come with good intentions, but I agree, we spend so much more time researching than the average person that it just comes off as a little thoughtless.

      Reply

  2. Lori

    Your blog has been a god send for me. I have felt so lost and misunderstood. I just got my diagnosis 2 months ago and it still hasn’t sunk in, I still feel like I just have a vestibular imbalance. I have goodish days and bad days and am trying to learn my triggers. I am still in the acute phase and getting attacks every few days so when I can actually go out and someone sees me and says oh I heard you were diagnosed with migraines I just smile and nod my head. And inside I’m like You have NO idea what I have, please don’t comment don’t ask just don’t. Say hi, nice to see you out and leave it at that.

    Reply

  3. Laurel

    Would you mind sharing a little about how you have gone about getting accommodated by airlines; documentation needed, department to deal with, etc?
    Great article. Thanks!

    Reply

    1. Alicia

      So for American Airlines you can call their main customer service line and they will set you up with wheelchair assistance. If you just need help pre-boarding you can speak with the gate agents when you arrive (same with Southwest). They will give you a medical pre-board pass. Most of the time they don’t ask for documentation, however a note from your neurologist should suffice. I also find it up to whoever is working that day as well. Sometimes I have a very easy and pleasant experience (cough cough southwest) and other times they make your life hell….(cough cough American airlines).

      Reply

  4. Jason Mazepa

    Great post! Have you ever tried the Medical Medium diet and protocols? There are a lot of people that swear by it and have healed migraines to vertigo etc. Very similar supplements too.

    Reply

    1. Alicia

      Hey Jason, I personally did not, but when searching for a diet I was looking for one that was specific to migraine and also had some medical backing to it. Medical medium isn’t a doctor and claims spirits tell him what to do…which is kinda odd to me (to put it nicely). I also tend to think celery juice is a placebo for a lot of people, but that being said, eating healthier and getting more vegetables is NEVER a bad thing. 🙂

      Reply

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