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my worst vestibular migraine symptom: derealization + depersonalization

11/2/2019

17 Comments

 
vestibular migraine symptoms
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

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.

combating derealization/depersonalization

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.

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 :)

OTHER RESOURCES:
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17 Comments
Megan
11/19/2019 02:24:06 am

That was beautiful. This really helped me.
Thank you ❤️🙏🏼
Sometimes I can’t even feel my legs properly as I walk, and it feels pretty scary. I try to stamp my feet into the ground hard to try and connect to them.
It’s been really hard but it’s wonderful to know another person has gone through the same and has reached the other side! Well done.

Megan

Reply
Lauren link
4/4/2021 11:12:17 am

Hi I'm suffering depersonalization due to vestibular migraine aswel, will if just go away itself

Reply
Em @ bliss-out.co link
4/4/2021 01:04:16 pm

Hi Lauren. I’m really sorry you’re going through this. In my experience it involves retraining the body and really healing the root cause. I hope you find my resources here helpful and don’t hesitate to reach out. I work with Vestibular Warriors on supporting healing and health.

Lauren link
4/4/2021 01:36:09 pm

Ohh right i see hun thanks so much, by any chance if you don't try things will the depersonalization just go away on its own? Im absolutely sick off life with it hun 😢 it's taking over so much mine was the same started with vestabular nertitus and im so disconnected from me own body, don't even recognise myself in mirror xx

Em link
4/4/2021 01:58:16 pm

In my experience it does not just go away on its own without healing the root cause. My journey started with VN too. I talk about healing VN on Vestibular Warrior YouTube and more about derealization in this video: https://youtu.be/H3CkURkYbks

I think my book may help you too: https://www.bliss-out.co/book.html

I focus a lot of derealization and what I did to support healing my body.

Rooting for you! I'm on Instagram at vestibular_warrior if you want to connect more too :)

Em @ Bliss Out link
11/24/2019 03:29:30 pm

Hi Megan! I'm so happy to connect with you. Yes, keep focusing on that- I believe there is so much we can do to elevate our wellness and keep moving forward. I share lots more on YouTube (Vestibular Warrior channel) and in the wellness hub here: https://www.bliss-out.co/vestibular-warrior-guide.html

I hope that you find it helpful and sending good vibes your way!!

Em :)

Reply
Lauren link
4/5/2021 04:20:14 pm

Im so sick of it im so disconnected from me own body, what's your views on topiromate for vestibular migraine and also do you believe the depersonalization will just dissappear and il be me again? Did your depersonalization go away

Reply
Diana Hayes link
2/9/2020 12:49:23 am

Thanks you so much for sharing this valuable information and experience! I was so happy to discover your book and your FB Vestibular Warrior page. Vestibular conditions are so isolating and I you are doing amazing to to connect us all. This is a huge part of the healing. I also had VN followed by VM and couldn't figure any of it out. I had migraines for years but never with vestibular symptoms. It gives me courage to believe I can heal fully from this. Although I am a writer I have not been able to describe this journey in words. You have done a remarkable job putting in words and in a book what is so often difficult to share and describe. Thank you again for all you do to make the healing possible for others.

Reply
Em link
2/10/2020 10:31:43 am

Hi Diana! Thank you so much for your kind comment- it makes me so happy to hear your feedback because that is exactly my mission with sharing all I do. As you know I believe in healing too!! We got this. Wishing you all the best :) -Em

Reply
Kate Giuliano
11/10/2020 09:41:37 am

Hi!

I have a question for you!

I am a migraine sufferer, but also had anxiety and PTSD from health trauma. I experience derealization fairly often. Sometimes, it lasts for weeks on end.

So, my question is how to tell if the cause is migraines or my mental health? How am I supposed to tell the difference because I am diagnosed with both. I don’t get it for a few days like an aura would be - it can last for a long time.

And, does it matter the cause? Even if it’s migraine caused, can you still treat it by accepting it and handling it as you would if it was anxiety caused?

Thanks!

Reply
Em @ Bliss Out link
11/10/2020 10:46:36 am

Hi Kate! Thanks for reaching out. I hear you completely... I did not have a diagnosis for 21 months so my mission has always been to support my mind & body in healing regardless of the label. For me it's been a mixture of holistic support (diet, craniosacral work, other therapies) as well as focusing on the vestibular migraine component. Have you looked into neuroplasticity? It's really powerful for derealization and absolutely something part of my healing and I continue to explore it. I highly recommend Dr. Joe Dispenza's book Becoming Supernatural as well as his meditations.

I absolutely believe that treating the root cause of your vestibular something is important but it's also all about making new connections in the brain.

Hope that helps and if you're looking for support, be sure to visit the Wellness Hub: https://www.bliss-out.co/vestibular-something-support.html

Wishing you all the best!

-Em :)

Reply
Kate Giuliano
11/10/2020 12:39:09 pm

Thank you!

I think I know what neuraoplasticity is… Like changing the connections that your brain has made from past experiences… I’m in CBT therapy and that’s proven to help with that as well.

I guess my frustration is just that I’ve never been able to get a clear answer out of doctors. I am worried that I am in therapy and working hard to improve my mental health… for a lot of reasons but a big one is to get rid of the derealization… So I’m worried that the derealization is just a migraine thing and I’ll never be able to get rid of it with a mental health approach. But based on your post, it sounds like regardless of the cause, it can be treated with a mental well-being approach. Would you say that’s correct? Have you ever had a doctor explain how exactly derealization is connected with migraines? Meaning, is it a migraine symptom just like light-sensitivity is, or is it a defense mechanism that turns on often with migraines. Because that distinction would help to understand how it can be addressed.

Sorry for the vent/questions! Just so frustrated!

Em link
11/10/2020 01:22:43 pm

I understand being frustrated completely! For me it has been healing from the inside out + mindset work. So diet, supplements, holistic support, craniosacral work along with neuroplasticity work. The root cause is not identical for all of us. My story is getting hit with vestibular neuritis which triggered a cycle of vestibular migraines. Have you explored healing with diet and other holistic support as well? You may enjoy my videos on Vestibular Warrior YouTube as well- I try to share lots there. Keep going and don't hesitate to reach out.

Kate Giuliano
11/10/2020 01:33:49 pm

My story started the same! That’s how I found your page. I started with vestibular neuritis which triggered BPPV. Then some symptoms lingered and got to the vestibular migraine diagnosis. But for me, I also have anxiety and PTSD I am not sure the vestibular migraine diagnosis is correct. Because anxiety can do all the same symptoms! That’s where the confusion is coming from. And cause I don’t get many migraines (unless they’re silent and I don’t know).

Reply
Em link
11/10/2020 02:27:38 pm

I know it's a lot to make sense of (and for so many of us!). Do you feel like you've healed from vestibular neuritis? That's where I think it's really important to address root cause. I share about that in this video: https://youtu.be/Ruo-Zr-tKbg

Feel free to reach out here: https://www.bliss-out.co/contact-em

Reply
Kate Giuliano
11/10/2020 02:36:45 pm

Yes, I think I did because I’ve taken all of the vestibular tests (caloric, eye tracking, etc.) and everything is normal. I also don’t experience dizziness. I literally only experience derealization with an occasional hormonal migraine.

Have you spoken to doctors about the Derealization? Do they say if it’s treated differently based on the cause?

Reply
Stephanie
2/13/2021 01:28:17 pm

I used your mantra during my most recent violent VM attack and it helped me so much. It calmed my anxiety and tears and made I'm convinced it shortened the episode. Merci!

Reply



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