The Vestibular Disorders Support Community
Read our welcome post, user support wiki & visit our member recommended products page

Vestibular Disorder study participants wanted

Hello all,
I am participating in a Study on dizziness being conducted at Mass Eye and Ear in Boston MA. The person conducting the study asked if I could post some information on it in hopes some of you would also agree to participate. Even though there are two parts to this study they understand if some of you can’t make the in person portion but would still like participation in the on line portion.

Here is the info:
If you suffer from a vestibular disorder (such as vestibular migraine or Meniere’s disease), you may qualify to participate in a research study conducted at the Jenks Vestibular Physiology Laboratory at Massachusetts Eye and Ear. We want to better understand the relationship between dizzy symptoms and cognitive complaints. Participation consists of two parts: 1) online questionnaires and testing completed at home on your computer or laptop and 2) one in-person session at Massachusetts Eye and Ear in which you will wear virtual reality goggles and be asked to perform simple tasks. You will be compensated at a rate of $10-25 per hour and reimbursed for transportation costs. For more information or to participate in this study, please contact Divya Chari, MD (Email: Divya_Chari@meei.harvard.edu; Phone: 612-747-6308).

3 Likes

As discussed in PM, I think this is a great thing to promote. I’ll pin it. Thanks for bringing it to our attention and best of luck with the trial.

3 Likes

Do you know if it matters whether we are medicated?

2 Likes

Very pertinent question. Certainly worth asking. Usually it would rule one out.

1 Like

I won’t go medication free unless we hit Mad Max society.

3 Likes

No, it does not matter. I did ask her if I was supposed to reply as my medicated self or when I was non medicated and she said as my medicated self. Some of the questions ask “how you feel when you are having an attack”.

Neither would I!

That changes everything. My medicated self and my non-medicated self don’t live in the same hemisphere.

Thanks!

2 Likes

Exactly Em. You got it in one. If the trial participants are on various cocktails of drugs and treatments have on earth are the researchers to know whether XYZ’s cognitive difficulties stem from the dizziness (the condition) or the fact they take Topiramate. Once people are medicated it interferes with their responses. It’s bound to.

1 Like

This is part of the original email I got.

"Thank you for speaking with me earlier today! As we discussed, my name is Divya Chari and I am an Otology/ Neurotology fellow at Massachusetts Eye and Ear. I am working with Dr. Steven Rauch MD and Dr. Rick Lewis MD, who specialize in vestibular disorders, to conduct a research study on patients with vestibular disorders.

I am emailing you to inquire about your interest in participating in our study assessing cognitive function, such as memory, attention, and spatial navigation, in individuals with vestibular migraine and other vestibular disorders."

I do not profess to know their business nor their methodology of the study. I do know that Dr. Rauch is very much on top of what’s going on in the VM world and I am trusting that he also knows how to run a study. It doesn’t hurt me to take an hour or so and answer some questions but if it helps them figure out ANYTHING to help people with vestibular disorders then I have done a little bit to contribute.

Hopefully some others on here will feel the same way…

2 Likes

Seems my comment has caused some confusion here. Sorry. I wasn’t questioning their abilities. Dr Raunch has I think recorded material which appears elsewhere on here under FAQs answered by neurologists but either way he is certainly well known and much respected. I am all for any kind of research into vestibular conditions. After 12 years being misdiagnosed how could I fail to be. Wish I could be part of it. It was just that I don’t understand how Is studying people who are living under the influence of drugs, the aim of which is to reduce/alter their vestibular symptoms, going to give them a full and true picture. As @flutters writes and I can myself confirm.

My previous reference to Topiramate still stands although I could quote many others within my own personal experience.

Let’s hope the interest generated by their investigation may lead to some long awaited research into root causes. It may do as very many medics don’t appear to have much appreciation of the ongoing difficulties MAVers can experience with cognitive function, spatial awareness etc. Only last week I spoke to a GP who had no idea that vestibular migraine could exist outside episodic attacks but in fact be an ongoing issue over many months or even years. I enlightened that one but for sure Dr Raunch is in a incomparably better position to bring about a better awareness Worldwide.

2 Likes

No confusion Helen, my point was that I don’t understand it either, but I am putting my faith in his/their ability to glean the information they need from this study because Dr. Rausch of all people understands that medicine is a game changer for us. They do ask what meds you are on in the questionnaire. All meds not just the ones for Vestibular conditions. I have to assume that they are using that information as well.

You can be a part of it. They prefer for you to be able to take the in person part as well, but are happy to have some take the online portion only. As I said, I don’t understand it fully, but because they are who they are, I am willing to answer the questions for them and hope it helps even a little bit. Worst case it doesn’t give them the answers they want, best case it helps them understand people with Vestibular disorders a little bit more!

1 Like

I was concerned if they include medicated folk they would miss out on some of the worst extremes.

I could take part? really? I am UK based. Rather a long way away. Oh I would be more than happy to fill in a questionnaire.

1 Like

I wrote them and volunteered yesterday. I included a couple of sentences on my history and medication. Haven’t heard back yet.

3 Likes

Due to the questions being raised, I reached back out to Divya about the medication and here is what she responded.

You (and the other posters) raise an excellent point about the variety of medications used to treat vestibular migraine as well as the range of symptoms patients experience while on and off medication. The purpose of our study is to evaluate the effect of cognitive function during interictal periods of vestibular disorders. That is, we are particularly interested in the long-lasting effects of vestibular dysfunction on cognition in between episodes of dizziness or vertigo. In addition to evaluating individuals with vestibular migraine, we are also studying patients who have other types of episodic dizziness (such as Meniere’s disease) as well as those with permanent vestibular impairment (such as those with vestibular neuritis). Thus, it is actually preferable to have people participate in the study when during an interictal period (i.e. when they are on medication and/ or in between episodes). Ideally, we would like to have patients participate at a time point at least two weeks after an episode of dizziness, imbalance, or vertigo.

She also mentioned a few people had reached out to her from this site so hopefully it will help others reach out as well! You being from the UK doesn’t preclude you from participating!

3 Likes

That is the exact text she wrote back to me! :grin:

3 Likes

Thx for that. Now it makes much more sense. Brilliant :bulb: maybe it will lead on to even greater things. I will email. My next concern might be how to establish I am in an interictal state :laughing:or maybe I have been in one constantly since mine turned chronic six years ago almost exactly. Who knows?

2 Likes

That’s my question too!

1 Like

I am in a intrarectal state (read as “pain in the ass VM” !)…sorry could not resist :slight_smile:

2 Likes