Hi there!

I found that when I was journeying along with my vestibular something (vestibular neuritis + vestibular migraines), it was one thing to slap a label on it, and a completely other thing to truly talk about how it felt. It was easy for a doctor to tell me I was experiencing dizziness, but that wasn't a fair description of it. I felt like I was floating 24/7 and that my world was off-kilter for months and months. Dizziness hardly summed up the complexity of how it felt.

Below I share several symptoms of vestibular migraines, but of course there are others. Our experiences may not be identical, but often there is great resemblance. I hope that my honest account provides a light for others journeying with vestibular migraines, trying to make sense of their symptoms.

Something I want to note is that my symptoms sort of evolved over time. The first year my symptoms were 24/7 and it was hard to make sense of the vestibular neuritis symptoms vs. vestibular migraine attacks. However, after the first year I had a better sense of the ups and downs, and attacks (or regressions as I called them) became much more clear. The symptoms were never identical from one attack to the next. For example, I never got extremely nauseous in the beginning; however, my last attack in July (which passed within hours, so grateful for that!), nausea/vomiting was a part of that episode. Lovely, I know. I point this out just to showcase that symptoms were not always consistent. What I discuss below is an array of the symptoms that I experienced over the course of eighteen months.

I discuss these symptoms from VEDA's website.  The full article can be read here. 

DISSOCIATIVE SYMPTOMS- this was my biggest symptom and the worst; it included derealization (disconnected from my environment) and depersonalization (disconnected from my body)

ANXIETY/PANIC- this spike was often my telltale sign of what was to follow

LIGHTHEADEDNESS- feeling like I might faint (this is a symptoms I experienced throughout my twenties along with derealization)

PHOTOPHOBIA- sensitivity to light or intolerance of light

VERTIGO- feeling like my world was spinning even though I was still

VISUAL ISSUES / DIMINISHED EYE FOCUS- difficulty focusing my eyes and my world appearing skewed (although I could completely see)

SPACIAL DISORIENTATION- suddenly needing to make sense of where I was; feeling unaware of my body's position

NAUSEA- this symptom made an appearance at times making me lose my appetite (and on a few occasions get sick)
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NECK PAIN- this would often happen before other symptoms showed up; turning my neck would become difficult and painful to the touch

I talk all about what derealization/depersonalization felt like in the below video.  It was as if I was living behind a window (read this blog post).  It was my worst symptom and the one that I felt kept me hostage to my vestibular condition.  

The anxiety that came with my vestibular condition was a beast that could not be ignored.  In Uncovering Bliss, I write: "​The anxiety that came with my vestibular condition could, and often did, bring me to my knees. Crumbling on my bedroom floor because it felt so heavy. I’d succumb to a pile on the ground. It was a physical anxiety that felt like it was swimming in my veins. It was animal and rarely felt connected to my mental state. The initial event had set it free in my system. Anxiety isn’t even the correct word for it... It was much more a fight-or-flight feeling that was so intense it felt like a tight sweater glued to my body that I couldn’t rip off."

Doctors would easily brush the condition of as simply anxiety, but I'd push back.  No way this was just anxiety- there was much more to it.

You know that feeling of being close to passing out?  That's exactly how this symptom felt.  Oddly I did faint a few times in my twenties and looking back I think I was experiencing a silent migraine, but at the time I couldn't make sense of it.  This symptom is certainly disconcerting 

I think I'll forever hate the lights in big box stores.  I remember the first time I went to Target after it all hit and it felt near impossible to move about the store.  As if the lights were trying to hurt me.  Their brightness was overwhelming and my body was screaming "stop!!!".  

I spent a long while working with the lights off in my office and now I wear blue light blocking glasses (I love these ones) whenever I'm under florescent lights.  The glasses make it so my eyes can relax a bit...and they're cute, so that helps (kidding).  

Vertigo is feeling off balanced, like you're spinning or your world is spinning.  As I mentioned, the first year my symptoms were constant, so nothing felt spontaneous.  It was a blur of dizzy awfulness.  However, as I was climbing to the 18-month mark and I was really improving, I very much could feel the ups and downs that came with episodes.  I have a memory of various attacks when vertigo hit out-of-the-blue.  In one attack which I detail in Uncovering Bliss, I climbed into my bed with my winter coat and boats still on as my world spun.  I wished closing my eyes made it all go away, but unfortunately it did not.  The spinning was intense and anyone who has dealt with it knows that it's miserable.   

After the initial event of vestibular neuritis hitting, my eyes went sideways.  That makes no sense to read, but it's absolutely how it felt.  In the first few days I was whipping my head back and forth as if to shake it off.  My eyes stopping focusing like they used to.  Focusing my eyes, something that I never thought about previously became something I had to give a concerted effort to make happen.  Also, my world felt skewed and this was something that improved over time.  This goes along with the whole viewing my life through a window thing.  The time came when I started to see a crack in the window and it was miraculous.  Then the window would shut and I'd be back behind it in my skewed world.  I'm sure if you've deal with a vestibular something you understand what I'm saying.

An example of this is me being somewhere that's familiar and suddenly feeling like I had to gauge my surroundings to better understand where I was.  As if things had moved and I wasn't exactly sure where I stood.  I remember turning around in a circle trying to gather my surroundings.  It's a bizarre feeling.

This one is pretty self explanatory.  Nausea and vomiting are miserable for anyone to experience, but add the other vestibular symptoms into the mix and it became the least of my worries at times.  I only actually got sick a few times, but the nausea certainly made a presence.  In the early days with the vestibular stuff it impacted my appetite.  I was drinking a lot of smoothies to fuel my body.

My neck would get stiff and often it would become difficult and painful to turn my head.  Sometimes this symptom would hit before the others as a warning of what was to come.  On many occasions you could find me lying on my foam roller, trying to get some mobility back.  It would often take days to get better.

Before I broke through the vestibular migraine hold, I felt like I was living behind and viewing my life through a window.  This feeling was every moment of every day.  My body wasn’t allowing me to fully comprehend my surroundings.  I could see but it always felt like I was looking through a window, and sometimes not a very clean one.  In the beginning it was terrifying.  It’s every moment and it’s a thick glassy window. 

I was banging on the window screaming out to the rest of the world and everyone was looking as if to say, “We see you.  You look perfectly fine.” 

Then I’d yell back, “What’s with the window?!”

“What window are you talking about?”, the world responded.

I’d feel a pang in my heart as it started to sink in.  Just because the window was very real for me, in no way meant that the rest of the world could see it.  If you have journeyed with a vestibular something, there’s a good chance you know exactly what I’m saying.

[Note: VeDA states on its website: “…a large portion of people with migraine often have no accompanying pain, their predominant symptom instead being vertigo (a spinning sensation) or dizziness/ disequilibrium (balance loss), mental confusion, disorientation, dysarthria, visual distortion or altered visual clarity, or extremity paresis. This presentation may result in a visit to the emergency room and extensive laboratory, imaging, and other diagnostic evaluations—often with normal results, which lead to increased confusion and anxiety on the part of the patient.”] 

​My understanding of vestibular migraines from the many Vestibular Warriors that I connected with was that I was dealing with a nervous system problem.  My eyes fill with tears as I type those symptoms because each one makes my heart hurt.  Flashes of memories dance in my head.  The dizziness lasted well over a year.  The rocking boat feeling lasted a solid nine months.  The feeling of unease was a part of me for far too long.  My symptoms involved dissociative symptoms, which include derealization (feeling disconnected from your environment) and depersonalization (feeling disconnected from your body), repeated dizziness (or vertigo), nausea and vomiting, balance problems, lightheadedness, photophobia (sensitivity to light), visual issues and feeling unsteady.

Sometimes the window that I looked through would be super clean and I would almost think it wasn’t there but then out of nowhere the smudge would return and my heart would sink.  I just had that thing cleaned, what happened!?  This window stuff sounds sort of trippy, right?  Yeah, that’s my vestibular stuff for you, only there’s no party and no one is on the dance floor, and it’s more like a bad dream that doesn’t quit.

I learned to live from behind this figurative window.  No one else could see it, so it was just a matter of building up my confidence so that I could do everything I once did but this time from behind my window.  In time, I did just that.  Everything I learned to do from behind my window only empowered me on my journey of healing.  I went to work, was a nurturing and caring mother to two little boys, I cooked meals, just simply showed up, found the power in meditation, and eventually found myself running the trails again and finding everything I felt I’d lost- all from behind my window.

I created a beautiful life behind my window and developed a mindset that I could do anything even with my window.  That’s when something magical happened.

Around fifteen months in with symptoms all day, every day to varying degrees, I started to notice that my window was slightly open.  The first time I noticed it, what I felt was pure bliss.  I hadn’t seen life without my window in what felt like an eternity, and I had started to forget what life looked like without it.  I didn’t know whether to sob happy tears or scream, or tell everyone in a one-mile radius, so I just danced in the kitchen (more on that in Uncovering Bliss).

In the beginning the window didn’t stay open completely.  It would open, and stormy days would blow it a bit closed.  Eventually, my toolkit kept it open.

Every day I stop to look at the world longer than I ever did before, because with vestibular stuff there’s a before and after, and my aftermath started out a thick smudgy window with lots of rainy days.  Over time, with persistence, putting self-care first, nourishing my body, refusing to look backwards and finding a doctor who understood, I stepped through.  I thank the universe for giving me the support to shatter my window.  These days I rarely have moments behind it.  It happens here and there, and it again ignites a new sense of gratitude when I find my balance.

​If you’re behind your window, I can step alongside you and point towards the direction of hope.  I want you to know that you’re not alone even though I know behind there it often feels so isolating.  I can only share what has helped me break my window.  By sharing, it heals the pieces of me that were wounded as I pounded that window with my fists and eventually found the hammer to finish the job.  By telling my story all the parts that were bruised as I stepped through the shattered glass are exposed.

For a while I wanted to be all perfectly put together because I figured then the world would never know about my secret window.  Now I want to show the pieces of broken glass, so others know that it’s possible to step through.  It’s not an easy journey and it has certainly left its mark, but that broken glass is now an incredible reminder of the power of the human spirit.

[this post is a chapter from my book, Uncovering Bliss]