My resilience saved me. Yours can save you. 💙

Last year, I had an elective surgery (a rhinoplasty, to be specific), and its effects are still there: the sensation of my body feeling like it’s on an elevator, the walls and objects in the room looking like they are shaking, my brain feeling like it’s shaking, and so on. I knew that something was off when I was experiencing these symptoms, I knew that my body never felt like this before. I was scared. 

I saw an ENT but it was a vestibular rehabilitation therapist who told me that I was most likely dealing with MdDS. He said there was no treatment or cure yet. I went home and read everything there was to read about MdDS, and most of it was negative. At 21, I felt like my life was over; I didn’t see a point in living when I couldn’t experience stillness or concentrate.

I cried every day. 
I laid in bed all day. 
I felt hopeless. 

This wasn’t a problem that money could fix, it’s not like I could have gone to a doctor and received an injection that could fix this sensation. The facts were there, no cure exists.

What could I do? 

That summer was the darkest time of my life; I experienced many negative thoughts and isolated myself from everyone. I rarely talked to my family members or friends. I tried to get my mind off of it by reading books. I took drives into the countryside and listened to music. I wrote in my journal a lot. I tried my absolute best to survive each day. Back then, it was so hard. I was prescribed an antidepressant which helped stabilize my anxiety. My therapist gave me some good advice, and I returned to finish my senior year of college. I started laughing again, I started feeling hopeful again, I started talking to more people again. Even though my body was still feeling this sensation, I was resilient.

I couldn’t let MdDS stop me from achieving my goals.

I like to think of my life before and after MdDS. Before MdDS, I thought my life would always be the same. Back then I felt really lonely, life kept going on, and there I was, living the same day over and over again. I was frustrated, depressed, and too hard on myself. Life felt so unreal; it even feels unreal now at times.

After MdDS, I realized that life is very unexpected. I realized that the only person who can save you during a difficult time is you. I realized that I am allowed to grieve what my body was capable of before and what it’s capable of now. I miss the stillness, I really do. I still miss so many things from before but I have emerged as a person of strength and resilience. I have learned to listen to my body and have experienced many life changing moments.

I know it’s scary, but you will be okay.

My symptoms improved through six weeks of vestibular rehabilitation therapy and medication, and have improved a lot since my onset last year. If you are new to MdDS, You WILL be okay. I am really proud of myself for being resilient. I am so proud of everyone who is reading this, you all are so strong. Let’s not give up, let’s continue advocating for ourselves and for a cure.

Anonymous MdDS Warrior
Age at onset: 21 years old

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12 comments

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  1. Margo

    I’ve been suffering from mdds for 5 years. I had treated at Mount Sinai in Manhattan. I got about 60% relieve. I feel like a star still now. No treatment in Canada. I did vestibular treatment in Canada. Very little. Please tell me what medicine helps

    1. MdDS Foundation

      A universally helpful treatment has yet to be found. As a member of our private support group, MdDS Friends, you can read many posts about medications that have helped some MdDS patients. Information on the group and how to join can be found here.

  2. Cris Albanese

    Hi Terri, thank you for sharing. My daughter suffers from this and it is so difficult to find any help. What clinical trials are in Los Angeles? Can you provide any info on what resources or clinical trial are LA? Thank you and keep fighting!!

    1. MdDS Foundation

      The clinical trials in LA are concluded. At this time there are no active clinical trials in LA. Information on current MdDS clinical studies can be found on ClinicalTrials.gov.

      For resources in the LA area, you may wish to ask for recommendations in MdDS Friends, our online support group. Information on membership can be found here.

  3. Silvia shanahan

    Someone mentioned medication…..Could you let me know what that is so I can talk with my doctor about it.

    1. MdDS Foundation

      Medication is a popular topic of discussion in our private online support group, MdDS Friends. You can learn more about the group and how to join on the Support page of this website.

  4. Silvia Shanahan

    Thank you so much for this….it gives me hope….I am new to this subject and have just begun to explore what help I can get here.

  5. Julie M. Smith

    I’m newly diagnosed and really needed that inspiring story!

  6. Terri Hare

    Thank you for sharing your post precious warrior! I am a 13-year Survivor of MdDS and believe me I have dark moments and have wanted to give up so many times but my faith in the good Lord and knowing that this too shall pass is the only thing that’s keeping me going. I have not been in the land of the living very much at all but when I get a chance to without vomiting or falling down or being completely isolated it gives me a look into the person that I was before this affliction. I have been to the only clinical trials that have been offered in Los Angeles and New York and everything else out of the box and still no cure , but God is still in control and could possibly heal us supernaturally. Let’s keep our hope in Miracles that can abound and accept this new normal and do what we can when we can because God still has a purpose for us as long as we are still here and want to finish strong! If you ever want to reach out to me and pray I would be happy to connect with you. My phone number is [▬]. My name is Terri Hare, MdDS Warrior

  7. Really great post ! Thank you for giving everyone hope; Good luck to you!

  8. Elaine Schlissel

    Thank you for sharing your beautifully written and hopeful story. Having gone through a bout of MdDS after an Alaskan cruise in 2010, I also found vestibular therapy to be the most helpful treatment. I still do the exercises prescribed by the therapist and, occasionally, see her for “tune-ups.” My story is still on the internet. It’s hard work getting better from MdDS, but it can be done. My best wishes to all of the warriors out there.

  9. Stacey Ochs

    Thank you for your inspiration! I need it!

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