The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

It's Time to Tell Your Story...


#1

Hello everyone! My name is Gillian, and I was diagnosed with 3PD in August of 2018 after having worsening symptoms with no answers for around 6 months.

I’m currently in film school and am working on my senior project. I figured, what better way to tell others about what happened to me, and all of you? I want to inspire doctors to be more well-informed and for patients to start advocating for their own care.

So, since my story is just one of many, please comment your own story below about your life with MAV, 3PD, Meniere’s, etc. I want to know about your diagnosis, the isolation, anxiety, how your friends and family were, the whole story! This will help for my little independent film to encompass more experiences than just my own.

Thank you all in advance, and wishing you all happy healing,
Gillian


#2

that is awesome! ill write my story later, great idea and would be amazing to have the video available for advocacy and education :slight_smile:


#3

Hi Gillian

All I can say is prepare to be inundated. Don’t worry. I’ll spare you mine!

Good luck with your project. Have you bought the posh new evening gown for the World premier yet? Sounds a great idea

How do you intend to reach your target audience pls ?

Aa you are now so busy, can we assume you are fully recovered? PPPD wan’t it? Are you going to enlighten us on how you achieved that? We’d be so interested to hear. Perhaps you’d better tell us your story too. Helen


#4

I would love to hear your story! Anything, even if it’s terribly long, will help me bunches. And I’m so glad that you like the idea!

I have another year for research and writing and then about 6 more months before the film has been shot and edited, so marketing is still in the air. As with any independent film, I’ll be mostly limited to social media and film festivals and hope that a distributor may want to distribute it or donate the funds to make it a feature length picture. I’m going to be on the lookout for other opportunities though!

Well, I’m definitely not fully recovered, but I do what I can to not let PPPD rule my life anymore. It took many opportunities and days from me already, so I’ve decided to stop letting it win. I’m currently doing physical therapy every day, which helps. My physical therapist also told me not to push my symptoms past a 4 out of 10 and to stop whatever I’m doing once I get there. Her standard was, “If you’re feeling symptoms for 20 minutes after the activity, you’ve done too much.” A lot of it, for me, has been a mindset to cope instead of control my 3PD. My story has been told on a separate post, but in short, I got a concussion in February of 2018. Since then, I had worsening symptoms and NO answers from doctors about why I was feeling dizzy. It wasn’t until the 8th doctor (who was a vestibular specialist at the best hospital in my state) that I got a diagnosis. If I had just given up on finding treatment, which I almost did, I would have been misdiagnosed with MAV by a previous neuro or I would have had to drop out of college because I was unable to function for about a month during the summer of 2018.

If you’re reading this, please please tell your story so that others will know that they are not alone. It’s time we stopped feeling like we were crazy because all of our test results came back normal.

Gillian


#5

I’m so glad you’re excited about the idea! And yes, I would love to have the video available to those in the medical field, sufferers, or even those close to ones that suffer with an “invisible disease/disability” so that they can understand!


split this topic #6

2 posts were split to a new topic: End of February the world spun


#8

Gillian, thanks for encouraging people to write their own story. However, there are already two Categories to capture this. Own posts in New Here … and Personal Diaries should cover it without needing a single Topic for multiple people?

I’ve now posted a user directive on this subject. I hope it will support your effort.


split this topic #11

A post was split to a new topic: Personal Diaries and Maintaining a Summary at the top.


closed #12