The survey for VM people is now open at
It covers case history, treatments, symptoms, and much much more. Thanks to those members here who helped shape the survey. I’d really love it if you could all take part and share this.
I even made a youtube clip explaining it:
Thank you all!
Thank you so much for putting this survey together, I can’t wait to see the results and I hope it helps us all! If that was a pilot study, I have a few suggestions.
- Perhaps consider listing individual SSRIs and SNRIs in the medications tried question. Or allow the user to click on multiple answers. In my case, for example, I tried Zoloft but it had no affect. I tried Prozac and it helped with light and sound sensitivity but not headaches & dizziness. I tried Lexapro and had bad reactions and side effects.
- List visual vertigo as a symptom (in the question with the rocking sensation, spinning dizziness, etc). I forgot to add it to the “other” box and I believe it is common enough where adding it would be warranted.
There is so much more that could have been asked. This is only the beginning. There are a few dilemmas I’m trying to grapple with
- Privacy - I really wanted to make the survey anonymous, but that means that I can’t follow up on responses to get further details where they might be really useful. Maybe in the next survey, adding contact details could be optional. That would give me the opportunity to invite only relevant people to submit further responses (based on their responses to previous survey answers), but still allow people to maintain anonymity if they want to.
- Maybe connected, but I think a dynamic survey format where the base questions are quite short, but answering Yes to a certain type of drug would open up a new question that went into more details as you mentioned as to which symptoms it helped, and side effects, etc. This might get passed the problem with having a really long survey, and loads of questions being irrelevant to many people.
I’m learning from this process, and your feedback is invaluable.
I like both of your ideas, especially the optional inclusion of the e-mail. I’ve been suffering with this condition for almost 7 years now and I can imagine I’m not the only one who would contribute any experiences they can to help aid with research and what patients actually experience. It’s time these doctors know fully what we’re suffering with on a daily basis and get pushed in the right direction! I would have been fine with a longer survey, but perhaps with an option to save your progress as most of us suffering have issues being on the computer for a long amount of time. Thanks for all of your hard work with this!