Thanks so much for sharing your story! We’re riding these crazy waves together as I suffer from MdDS too. Except I wish we were surfing real ocean waves in Bali instead of our MdDS ones . Best of luck!
I’m sorry that you’re on the same “boat”, no pun intended, as me. But, Thank you for sharing your story and experiences. I’ve had MdDS for over six years starting on a flight back from vacation. Sadly, i haven’t been in remission or on vacation since then. How i miss being on the boat and enjoying the calm waters. Unfortunately, my symptoms are exacerbated by my diagnosis of Bilateral SSCD, Vestibular Migraines and Menieres. Anyway, I really hope you can find some peace and stillness in your life. Good luck to you ❤️🙏🏻
Oh gosh Christy I am sorry to hear this :( I struggle with vestibular migraines too - they are NASTY. I hope you also can find some stillness and peace too - even if its just in your mind or for a moment <3
Hey Ashley. 👋 The most important thing was managing my lifestyle and managing triggers. Triggers for me included coffee, too little sleep (less than 8 hours), stress, LED lights (blue lights). Things that helped me were reducing all of the above and walking and weight training. I did vestibular therapy at the beginning and I think it could have helped...but it was quite intense and could also aggregate symptoms so opted for a more gentle approach. Is mdds something you battle with as well?
“Sometimes, it’s about finding your own balance in a world that’s constantly in motion. For me, it’s about living in a relationship with this disorder and not fighting it. It’s about riding the waves as they come, and navigating the ebbs and flows whilst still trying, my very best, to enjoy the ride.”
Wow. Thank you for sharing. I am sorry. I have never heard of this. I am glad I come across this. I am always learning something new daily. I send you serene and calm thoughts and vibes. 🙏🏽🩵
Its pretty crazy how many weird disorders are out there ...but at the same time it makes me grateful knowing all the things my body is getting right and how much it does for me daily. 🥰
Thanks for sharing, I’ve been suffering from it after a cruise trip last year and my ENT has also deduced that my brain is hypersensitive – I scored extremely well for my hearing test for someone in their 30s. Knowing that information helped me a lot in managing the situations I put myself in, so I can limit the triggers. I’ve learnt to live with the symptoms too, although there are days where I get really upset about it. Stay strong! Sending love and calmness ❤️
Sorry you also experience this Zhough. I dont know...maybe the hyper sensitivity is trying to tell us something. To stop repressing our gifts or to use our gifts in some way. I think about this sometime. HSPs used to be a lot more revered in our tribal days that what society allows for today.
I enjoyed your tongue-in-cheek description of influencers and deeply spiritual people in Bali! What a challenging time you had. I'm glad you were able to get a diagnosis for your condition, and I love how you lean into it instead of resisting it. I've had periods of vertigo that have lasted as long as a month, so I understand how challenging it must be to have a condition like MdDS. I'm also sensory sensitive in all my senses, especially hearing. Thank you for educating us about MdDS.
Thank you Sandra for reading. I'm sorry you suffer from vertigo. It's not fun at all! There are so many conditions linked to dizziness and vertigo that people experience....most people I've spoken to have experienced something at one time. I sometimes wonder if there might be a connection between being an HSP and these conditions... the vestibular system is one of our sensory functions after all!
I’ve been to Bali twice, once in 2015 and again in 2022. I was shocked by how "influencer-y" it had become and how much it had changed over those 7 years! A little heartbreaking. If you’re inclined to go back might I suggest Lombok, Kuta is a particularly nice little surf town and not nearly so crowded/overrun.
Hey Alexa gosh yeah it's quite sad how overrun it has become. I'm not sure I will be back there any time soon (or ever) haha #ptsd. I do miss those incredible smoothie bowls though 🤤
Hugs! Thank you for sharing. 💛 I've never heard of this, but I can only imagine how hard it is having an invisible illness. Sending love and healing energy your way!
Thanks for sharing. So glad you were able to find a diagnosis. I get lightheaded whenever I stand up too fast. I guess I’m used to it. And I’ve had vertigo and dizziness a few times. One time I had vertigo and it was was related to my soy intolerance which I figured out on my own. And during Covid I had an ongoing feeling like I was going to fall over. That has gotten better lately and I’m not sure why. More cardio and less caffeine? Thanks for your info. I will investigate further. 🙏🏽
Hey Carol. Wow...super interesting to hear about the soy allergy linked to vertigo! I'm allergic to soy but it just gives me acne 🥲 Thanks for sharing. Generally stress makes vertigo /dizziness worse so I'm not suprised you experienced more of this during Covid. I think all of our nervous systems were shot during that time!
I too suffer with MdDS, 10 years now, since a 5-day cruise. Same journey as you, and many others, trying to get a diagnosis, enduring loads of tests and scans, and managing healthcare professionals who have no clue about this disorder. As you, I just deal with it as it comes, good days and bad. As I age I think the bad are outweighing the good, unfortunately. I developed ocular migraines a few years ago, another neurological disorder, which complicates things even more. Glad you have adjusted to the journey, as have I. Ride the waves!
I am sorry you are dealing with this condition as well Joyce :( And yeah it does seem that life tends to stack other conditions on top of this to overcomplicate things even further. I'm sorry your bad days outweigh the good ;( I can't really remember what it feels like to be 'still' anymore - its just become my new normal.
What a crazy time. I can’t imagine all that you went through. My grandmother has had vertigo for as long as I can remember. Her most recent episode though was actually caused by extremely low sodium. It put her in the hospital and really affected her mentally. As a kid I fainted several times over the years. Always seemingly due to dehydration. I started making sure I was drinking enough water and much less pop. But lately I have been having short dizzy episodes when turning my head while sitting. I haven’t really figured out what’s going on yet. It’s not “severe” enough I guess yet for my doctor to take me seriously. We’ll see what happens.
I’m glad you figured out what worked well for you to manage the triggers. I’m in the process of trying to figure it out. I went on a trip in June that included a plane ride and one day on a boat. When I returned home my ear felt full and I felt like I was on a boat. I’ve been treated for a middle ear infection while none of the other sensations never went away, only got worse. (Walking on a boat, gravity pulls, and small bobs every now and then when I’m sitting ). I just started vestibular therapy with them thinking it’s labyrinthitis while I’m not so sure that’s what it is. I’m nervous for this to be MdDS
Thanks so much for sharing your story! We’re riding these crazy waves together as I suffer from MdDS too. Except I wish we were surfing real ocean waves in Bali instead of our MdDS ones . Best of luck!
Me TOO Katie 😅 Wishing you luck and healing on your journey too!
I’m sorry that you’re on the same “boat”, no pun intended, as me. But, Thank you for sharing your story and experiences. I’ve had MdDS for over six years starting on a flight back from vacation. Sadly, i haven’t been in remission or on vacation since then. How i miss being on the boat and enjoying the calm waters. Unfortunately, my symptoms are exacerbated by my diagnosis of Bilateral SSCD, Vestibular Migraines and Menieres. Anyway, I really hope you can find some peace and stillness in your life. Good luck to you ❤️🙏🏻
Oh gosh Christy I am sorry to hear this :( I struggle with vestibular migraines too - they are NASTY. I hope you also can find some stillness and peace too - even if its just in your mind or for a moment <3
Thanks for sharing your story. Is there anything you did or tried that seemed to help your symptoms?
Hey Ashley. 👋 The most important thing was managing my lifestyle and managing triggers. Triggers for me included coffee, too little sleep (less than 8 hours), stress, LED lights (blue lights). Things that helped me were reducing all of the above and walking and weight training. I did vestibular therapy at the beginning and I think it could have helped...but it was quite intense and could also aggregate symptoms so opted for a more gentle approach. Is mdds something you battle with as well?
I feel braver today after reading your words:
“Sometimes, it’s about finding your own balance in a world that’s constantly in motion. For me, it’s about living in a relationship with this disorder and not fighting it. It’s about riding the waves as they come, and navigating the ebbs and flows whilst still trying, my very best, to enjoy the ride.”
Thank you Jeannie that’s an amazing compliment <3 So glad you found your way over here!
Wow. Thank you for sharing. I am sorry. I have never heard of this. I am glad I come across this. I am always learning something new daily. I send you serene and calm thoughts and vibes. 🙏🏽🩵
Its pretty crazy how many weird disorders are out there ...but at the same time it makes me grateful knowing all the things my body is getting right and how much it does for me daily. 🥰
Absolutely. It is inspiring to hear your positive perspective🩵🩵
Thanks for sharing, I’ve been suffering from it after a cruise trip last year and my ENT has also deduced that my brain is hypersensitive – I scored extremely well for my hearing test for someone in their 30s. Knowing that information helped me a lot in managing the situations I put myself in, so I can limit the triggers. I’ve learnt to live with the symptoms too, although there are days where I get really upset about it. Stay strong! Sending love and calmness ❤️
Sorry you also experience this Zhough. I dont know...maybe the hyper sensitivity is trying to tell us something. To stop repressing our gifts or to use our gifts in some way. I think about this sometime. HSPs used to be a lot more revered in our tribal days that what society allows for today.
I enjoyed your tongue-in-cheek description of influencers and deeply spiritual people in Bali! What a challenging time you had. I'm glad you were able to get a diagnosis for your condition, and I love how you lean into it instead of resisting it. I've had periods of vertigo that have lasted as long as a month, so I understand how challenging it must be to have a condition like MdDS. I'm also sensory sensitive in all my senses, especially hearing. Thank you for educating us about MdDS.
Thank you Sandra for reading. I'm sorry you suffer from vertigo. It's not fun at all! There are so many conditions linked to dizziness and vertigo that people experience....most people I've spoken to have experienced something at one time. I sometimes wonder if there might be a connection between being an HSP and these conditions... the vestibular system is one of our sensory functions after all!
I think there is a connection since I’m HSP, too, and sensory-sensitive across the board. Fortunately, I haven’t had an episode in a long time.
I’ve been to Bali twice, once in 2015 and again in 2022. I was shocked by how "influencer-y" it had become and how much it had changed over those 7 years! A little heartbreaking. If you’re inclined to go back might I suggest Lombok, Kuta is a particularly nice little surf town and not nearly so crowded/overrun.
Thank you for sharing!
Hey Alexa gosh yeah it's quite sad how overrun it has become. I'm not sure I will be back there any time soon (or ever) haha #ptsd. I do miss those incredible smoothie bowls though 🤤
Hugs! Thank you for sharing. 💛 I've never heard of this, but I can only imagine how hard it is having an invisible illness. Sending love and healing energy your way!
Thank you Megan appreciate that 🙏
Thanks for sharing and keep us updated on your condition. I've never heard of it before but I wish you peace and calmness.
Thank you Darla 🪷
Thanks for sharing. So glad you were able to find a diagnosis. I get lightheaded whenever I stand up too fast. I guess I’m used to it. And I’ve had vertigo and dizziness a few times. One time I had vertigo and it was was related to my soy intolerance which I figured out on my own. And during Covid I had an ongoing feeling like I was going to fall over. That has gotten better lately and I’m not sure why. More cardio and less caffeine? Thanks for your info. I will investigate further. 🙏🏽
Hey Carol. Wow...super interesting to hear about the soy allergy linked to vertigo! I'm allergic to soy but it just gives me acne 🥲 Thanks for sharing. Generally stress makes vertigo /dizziness worse so I'm not suprised you experienced more of this during Covid. I think all of our nervous systems were shot during that time!
Have you ever experienced a dizziness, or vertigo related condition?
I too suffer with MdDS, 10 years now, since a 5-day cruise. Same journey as you, and many others, trying to get a diagnosis, enduring loads of tests and scans, and managing healthcare professionals who have no clue about this disorder. As you, I just deal with it as it comes, good days and bad. As I age I think the bad are outweighing the good, unfortunately. I developed ocular migraines a few years ago, another neurological disorder, which complicates things even more. Glad you have adjusted to the journey, as have I. Ride the waves!
I am sorry you are dealing with this condition as well Joyce :( And yeah it does seem that life tends to stack other conditions on top of this to overcomplicate things even further. I'm sorry your bad days outweigh the good ;( I can't really remember what it feels like to be 'still' anymore - its just become my new normal.
What a crazy time. I can’t imagine all that you went through. My grandmother has had vertigo for as long as I can remember. Her most recent episode though was actually caused by extremely low sodium. It put her in the hospital and really affected her mentally. As a kid I fainted several times over the years. Always seemingly due to dehydration. I started making sure I was drinking enough water and much less pop. But lately I have been having short dizzy episodes when turning my head while sitting. I haven’t really figured out what’s going on yet. It’s not “severe” enough I guess yet for my doctor to take me seriously. We’ll see what happens.
I’m glad you figured out what worked well for you to manage the triggers. I’m in the process of trying to figure it out. I went on a trip in June that included a plane ride and one day on a boat. When I returned home my ear felt full and I felt like I was on a boat. I’ve been treated for a middle ear infection while none of the other sensations never went away, only got worse. (Walking on a boat, gravity pulls, and small bobs every now and then when I’m sitting ). I just started vestibular therapy with them thinking it’s labyrinthitis while I’m not so sure that’s what it is. I’m nervous for this to be MdDS