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:
vestibular migraine symptoms
DISSOCIATIVE SYMPTOMS- this was my biggest symptom and the worst; it included derealization (disconnected from my environment) and depersonalization (disconnected from my body)
ANXIETY- 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; big box stores and/or florescent lights were the hardest to handle
VERTIGO- feeling like my world was spinning even though I was still
VISUAL ISSUES- difficulty focusing my eyes and my world appearing skewed (although I could completely see)
Today I'm focusing on the dissociative symptoms. Those were the ones that kept me hostage to the vestibular condition. Made it feel like I was living in an alternate reality and not even connected to my own body and life. Like I could just float away into the darkness and never return... I know that sounds dramatic, but it's really how it felt. In the beginning the symptoms were terrifying, but over time I learned more about them and how to combat them. It became a dance and then an art.
Would I fall into the deep abyss or would I find my way out?
I hope that you've guessed that I indeed did find my way out and I make it my mission these days to help other Vestibular Warriors along the way, because if there's someone out there in the darkness of the vestibular migraine stuff, they deserve a friend along the way.
I talk about life behind my window (read this post). That's how I describe how these symptoms felt.
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.
my tips + tricks
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.
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.