What does a vestibular migraine feel like?
My mission with this post is to shine a bright light on what vestibular migraine symptoms feel like. The experience of living with the symptoms encompasses much more than a simple label of dizziness, anxiety, vertigo etc...it's broader than that. I hope by sharing what it felt like, it helps others on their path with vestibular migraines and beyond.
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.
vestibular migraine symptoms
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
Let's talk how it felt in the vestibular migraine storm:
What are vestibular migraine symptoms?
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
photophobia (sensitivity to light)
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).
spontaneous vertigo attacks
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.
diminished eye focus
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.
nausea and/or vomiting
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.
I share lots more on my Frequently Asked Questions page as well as on the mind and body experience of a vestibular condition in my book Uncovering Bliss: A Journey with a Vestibular Condition and Beyond. I'd love to connect with you.
I wish you all the best on your wellness journey.
Get Em's book- Uncovering Bliss: A Journey with a Vestibular Condition & Beyond
Vestibular Warrior Wellness Hub + Resources
YouTube Videos [Vestibular Warrior]
Essential Oils for Vestibular Warriors
Em's Routine When Symptoms Heighten
Migraine Vegan Diet
Bliss Out Vibes Podcast for Vestibular Warriors