Discovering the “Vestibular Migraine Experience” Device

Kelley NunnMy Migraine Blog

Beach House On Stilts - Feeling the Vestibular Migraine Sway

Excedrin’s “Migraine Experience” Device

Recently, Excedrin Migraine came out with a new device, seen in the video above, that emulates the migraine aura experience such that non-migraineurs can experience the “more than just a headache” aspects of a migraine. Of course, Excedrin has a vested interest in people purchasing their migraine products, but the effect of raising awareness about the realities of migraine is, in my opinion, absolutely beneficial to the migraine community.

And that got me thinking. It would be incredible to be able to show non-migraineurs the vestibular migraine experience! The constant rocking, not quite understanding where you are in space, difficulty walking, room spinning, etc. Imagine if our significant others, friends, family, and co-workers could actually experience these vestibular migraine symptoms! They would gain such an understanding of what we vestibular migraineurs go through on a daily basis. But how could someone possibly emulate that experience?

Discovering the Vestibular Migraine Experience Device

Here’s how I discovered the Vestibular Migraine Experience Device:

This weekend, I spent a night down on the beach in Rehoboth, Delaware for my friend Cassie’s bachelorette party! It was about a 2-hour drive down from my house, and I spent most of the day beforehand preparing my migraine-free, fresh foods for the weekend. The drive down went smoothly, and I felt pretty good! When we arrived at the beach house, I moved all of my stuff into my room for the night, and sat down with the other ladies at the kitchen table.

Then suddenly, I felt very dizzy like I was rocking back and forth– typical vestibular migraine style– but I couldn’t understand why. It was so strange! How could I have gone from feeling completely fine to feeling dizzy so suddenly just by sitting down at the table? Something was definitely up. Had I been triggered by the visual motion sensitivity on the drive down? What had I eaten that morning? Was there anything questionable that could have triggered me?

And then I realized, something about this rocking feeling was slightly different from what I typically experience with vestibular migraine: I could feel the movement in more than just my head. My entire body was sensing that the house around me was moving. And that’s because it was!

Sitting in a House on Stilts During a Storm is Like Living With Vestibular Migraine

Beach House On Stilts - Feeling the Vestibular Migraine Sway

The Vestibular Migraine Machine: A Beach House on Stilts

That weekend, there happened to be a pretty hefty wind and rainstorm passing through the Delaware area. As a result, our beach house was being pummeled with 15-20mph sustained winds, with gusts up to 30+ mph. Being a house on stilts, the building was rocking back and forth with every gust!

It was extraordinarily validating to hear my friends’ perspective on the constant rocking sensation that I experienced on a daily basis for years. Almost everyone concurred that they started to panic when they felt the rocking at first– thoughts running through their heads rapidly of what was going wrong inside their bodies. One friend said she felt suddenly sick upon sitting down, wondering if she had eaten tainted food. Another friend questioned the energy drink she had just consumed. My good friend, Hannah, said to me, “Wow, Kelley. Is this what you feel like all the time?” Yep! 100% it is. Sometimes the rocking is worse, sometimes it’s barely noticeable, but it’s ALWAYS there.

I came up with this rating system for house on stilts relevant to vestibular migraines, in which each range of wind speeds represents a different type of rocking experienced by vestibular migraineurs:

— 5-15mph winds: This represents the constant day-to-day rocking of vestibular migraine. Always a slight rocking back and forth.

— 15-25mph winds: This is what it feels like when the world is rocking around me, but I can still get through some of my day-to-day activities. I’m probably having a bit of trouble walking or looking around.

— 25-50 mph winds:This is what it’s like when the world around me is moving with a vengeance! Nope! Absolutely no chance that I’m walking around, or being productive in any way while I’m experiencing this level of dizziness. The feeling is downright terrifying.

— And if the House Gets Picked Up By A Tornado:This is what it feels like when the room around you starts spinning! You know, Wizard-Of-Oz-Not-In-Kansas-Anymore Style.

In Summary,

Ok, so this post in general has been somewhat silly. But in all seriousness, if you know someone who doesn’t understand what the rocking sensation of vestibular migraine feels like, tell them to try out a beach house on stilts during a wind storm! Perhaps then they’ll understand what it’s like to be dizzy and out-of-sorts ALL the time, like we feel on a daily basis.

Just like Excedrin’s “Migraine Experience” device, this beach house on stilts tactic only represents ONE symptom of vestibular migraine. But at least it’s a start!