One of the scariest things about vestibular migraine is when an attack comes out of nowhere. You could be reading a book, combing your hair or just lying on the couch and a sudden wave of dizziness can abruptly take over your body leaving you in a state of panic. I have dizziness daily, but when I experience bad attacks, it can make me feel as scared as I did on the first day coming down with this illness.

Anyone with a vestibular disorder or vestibular migraine will describe their dizziness in many different ways. Whether they feel like they just got off the swings at the fair, free falling on an elevator or feeling drunk and hardly being able to walk. (You can check out my girl The Dizzy Cook’s “vestibular migraine symptom dictionary” for a full list of descriptors here.) 

And while I do have other dizzy symptoms such as the ones above, I often experience dissociative symptoms such as depersonalization or “Alice in Wonderland Syndrome” when I have an attack. And when I do, I feel shaken to my core.

What is Alice in Wonderland Syndrome?

Most of us know the story or have seen the Disney version of Alice in Wonderland. If she took a bite of a treat, she would either grow large bursting out of a house or drink a sip from a bottle and shrink to the size of an ant. During a vestibular migraine attack, I experience Alice in Wonderland Syndrome, which causes your brain to have an altered perception. Some symptoms may include:

-Your body parts may appear to be bigger, smaller, closer, or farther away than they are
-Straight lines make look wavy
-Stagnant objects appear to move
-Three-dimensional objects make look flat
-Things may change colors or tilt to the side
-Faces can look distorted and people or objects seem stretched out

These are the clinical symptoms, but they can be very different for anyone experiencing this during a migraine attack. Honestly, now that I’m an adult and have a vestibular disorder, I understand why the creator of Alice in Wonderland had subliminal drug references in the story. I truly feel like I’ve taken shrooms when this feeling comes over me.

In honor of “World Brain Day” focusing on migraine this year, I decided to share my story.

(The passage below may cause for you to feel dizzy, so please read cautiously.)

Last Friday Night

This past Friday I had a horrible migraine attack. One so scary it left me on my couch crying because I felt like I had lost control of my body. Looking back to last week, I was doing everything possible for an attack to occur. I was stressed with work and personal issues and was ignoring my body when it was needing a break.

Rushing to get out the door, I began to brush my teeth and in the middle of it, felt as if my hands were moving slower than my reflection in the mirror. It was like a horror movie where the person staring back at me looked like me but was moving differently.

Trying to ignore what I was seeing and avoid feeling anxious, I continued to look down as I finished brushing my teeth. I’ve been here before and knew to try to stay calm. When I went to reach to put my toothbrush on the stand, I knew I was at a point of no return.

As my arm extended to put my toothbrush down, I lost feeling in my hands, and it appeared as if my arm had stretched out 2ft in front of me beyond my reach. My normal inclination is to panic but rather than make what I was experiencing worse, I sat down and began to find my breath.

You see, I experienced these symptoms in a constant state the first 6 months of coming down with this diagnosis. My hands never seemed like my hands. I know that sounds so weird, but they always appeared to be so far in front of me, and still to this day, I try not to pay too much attention to them. That sounds crazy, right? Unfortunately for me, that’s usually the sign I’m having a bad attack and was the case on Friday.

Knowing that I couldn’t deal with this alone, I asked for help from my husband. He sat me down on my couch, and when I began to panic and cry, reminded me of everything I needed to hear. That I’m not losing my mind. That it’s a symptom of my vestibular migraine and I needed to calm down before making it worse.

I took my emergency meds and waited for this feeling to pass because, eventually, it always does. And it’s a reminder to put my self-care first and foremost.

You’re Not Crazy

I decided to share this story (and had a hard time writing it) because I feel like dissociative symptoms are so misunderstood. It’s so hard to explain to people what you’re experiencing without sounding like you’re losing your mind.

I remember when I was trying to find a diagnosis, a few doctors just chalked up my symptoms to be a “psychological” issue and left it at that. I would leave feeling crazier than I did before, but I knew that what I was experiencing had to be something greater than a fit of anxiety. Sure, this disease was making me anxious, but something bigger was happening.

Luckily, when I found my vestibular neurologist, Dr. Beh, he explained to me that some people experience these symptoms during migraine attacks, and it just goes to show how fragile our brains can be.

So, for those who are experiencing these types of symptoms, know this – you’re not crazy. This reaction is very common for people with migraine, vestibular disorders and epilepsy.

And if you do feel out of your body during an attack, take your meds, turn off the lights, play some relaxing music and most importantly, take a deep breath.

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