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)
​
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.

Hi out there!

One of the ways I most often connect with other Vestibular Warriors is through sharing the mind and body experience of my vestibular condition.  It's an avenue that I'm incredibly excited about and one you'll be hearing more about very soon (hint: book!).  

I recently shared on my FAQ page the symptoms I experienced during the messy middle of my vestibular condition and vestibular migraine episodes.  Although the beginning and middle were more like a mashup of symptoms that I couldn't make sense of.  Here's a quick glance:

There are many factors that went into play when it comes to my healing from vestibular neuritis and tackling the vestibular migraine episodes.  It certainly wasn't overnight.  That feeling being disconnected from my body and environment- I had to address it in the  moment over and over (and over!) again.  I had to force myself to be in the moment, which as I'm sure you understand is no small task when you feel like you're in the Upside Down aka alternate reality (watch: Stranger Things on Netflix).

​Healing happens on a deep level and it's about nourishing the mind and body, and providing it holistic support every step of the way. 

But in the moment when the dissociative symptoms were flooding my system and I felt disconnected from myself, I needed to develop a plan of action when the symptoms were crashing. 

Keep in mind that this is all based on my personal experience, so please listen to your own body and do what works best for you.  That is always what is most important.  Here's my action plan when the symptoms were at their worst or when I really needed to pull myself back into reality (or at least try!):

MOVEMENT + MEDITATION - Kait Hurley's workouts

I had to get moving and get my mental state in a different place.  I know this is easier said than done.  I started doing yoga-like workouts 18 months in and they were a game changer.  After days, weeks and months I started to feel more grounded in my body.  They still are a huge part of my wellness routine.  I share about Kait Hurley's workouts all the time.  I can roll out of bed and start a workout.  In the beginning, that's exactly what I did every day.  It felt really hard at first.  But it was worth it.  My mind and body says a big thank you!

USING MY BRAIN

I know this is strange to say because we're always using our brain...  Have you tried doing math while being in a derealized state?  It's hard!  I would force my brain to get working and in doing so it would make me feel more present.  Now this was rarely math, but I'd dive into work projects that required me to push beyond the fog.  This took a lot of practice, but with time it got a lot easier.

HOLISTIC SUPPORT

So much goodness to share here!  In the beginning I was going to the chiropractor a few times each week and getting cranial sacral therapy.  Another thing that helped was walking in the grass (barefoot, if possible) and quite literally feeling the earth beneath my feet, letting me know I still was on solid ground even if it didn't feel that way.  A holistic doctor recommended this to me and it was a really good tip and one I need to remember more often.  None of it was an overnight fix, but it provided support.

In the moment, I turned to pure plant oils (and still do every single day).  Nothing like a dab of Peppermint under the nose, on my temples and around my hairline to bring me more into the moment.  It was recommended to me to pair a mantra with an oil blend that I loved.  A reassuring blend (made of Fractionated Coconut Oil, Vetiver Root, Lavender Plant, Ylang Ylang Flower, Frankincense Resin, Clary Sage Flower/Leaf, Marjoram Leaf, Labdanum Leaf/Stalk, Spearmint Herb) spoke to my soul.  I would tell myself I am grounded while rolling the oil on my temples and wrists.  I know it sounds woo-woo, but it was comfort for my heart and soul.  I used my oils hourly as needed and they still play a big role in my wellness.  

WRITING + CONNECTING

This sort of goes along with the brain tip, but letting my emotions flow and connecting with other Vestibular Warriors in support groups in the moment was incredibly helpful.  I could say the words "I feel disconnected" and immediately feel understood.  I didn't start sharing about my experience until close to a year in, but writing became incredibly therapeutic and coming up with the words to describe how I was feeling and sending them out to the universe was healing in itself.  

CREATING MY REALITY

This is a big one.  This is the one that required a mindset shift and work on it each and every day.  Just because I felt disconnected did not mean that I actually was disconnected from my life.  Read that again if you need to.  My point is that I needed to create my world.  So even if it felt awful, it was up to me to make it better.  To find happiness in the small moments and try to laugh each and every day.  To find the light in the dark... This was such a process. 

My last intense attack was over the summer and in a flash I was back behind my window pounding to break free.  I turned to each of the above items to find my way out:

-reaching out (by text) to a Vestibular Warrior who understood and could be a friend by my side
-writing about my experience because I knew sharing would help others
-telling myself that I was ok, saying the mantra "I am safe. I am grounded..."
-following my routine when symptoms intensify with oils
-going for a walk and feeling my feet beneath me

That day, the dizziness did intensify, I threw-up out the passenger door as my husband drove me home (awful, I know) and crawled into my bed.  But within a few hours I came back around and I felt confidence having given it my all and fighting back.  Sometimes that's all we can ask for.

​I hope that you found this helpful.  If you too deal with this symptom (or other VM symptoms), I'm sending love and light your way.  I know how hard it is to go through the motions in that state and I applaud you for showing up.  

You got this.

Em :)