Invitation to participate in a research project collecting experiences of vertigo

Hi everyone,

I am delighted to find this group. I have lived with Ménière’s Disease for a couple of years now, and am slowly finding ways to cope. I look forward to learning from everyone here and listening to people’s experiences.

I am an academic at the University of St Andrews, Scotland, UK, am running a research project designed to collect life stories from people who live with vertigo. This is not a clinical research project, but is designed to spread awareness of what vertigo is like to live with. I would like to interview people about their experience of vertigo – how it has affected them, the attitudes they have faced, and what they wish people knew about what it feels like. You can find out more by googling my name with St Andrews. The research project itself has been approved by the University of St Andrews Research Ethics Committee.

If you would like to participate, please reply here, or send me an email (ar220@st-andrews.ac.uk).

I hope you have as good a day as possible, and look forward to interacting with you further.

All best,

Anindya

https://www.st-andrews.ac.uk/english/people/ar220/

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Welcome Andidya.

You are welcome to use any quotes on the website but you should:

  • get the posting individuals explicit consent to publish it elsewhere
  • attribute the website in any published material

I’m happy for you to reach out to people to get involved.

I would be grateful if you could share a website link to your department at St. Andrews.

Cheers

James

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Many thanks for this, James.

I tried to include a link but was told links weren’t allowed. May well have been making a mistake though. The relevant link:

https://www.st-andrews.ac.uk/english/people/ar220/

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I explicitly granted you the permission. New users are not normally allowed to share links (security, spam, etc.)

Thanks for sharing and best of luck with the project. I hope it can raise awareness.

Oh, and please share any results with us! :slight_smile:

Also feel free to post about your personal experiences here and use the website resources as you see fit for your own personal benefit.

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Oh I see! Many, many thanks. And will definitely share as soon as I have written something.

All the best.

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Can you tell us a bit more about the vertigo research project? I checked your link, but your research expertise seems to be in a completely different area.

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Sure. This is a new research direction for me, so I have not published anything on this yet. I am looking at three interlinked areas: how medical conceptions of vertigo have changed over time, what vertigo is like to live with, and how these connect (or don’t) with examples of vertigo from literature and culture. One example might be supermarkets. Many people (including myself) find supermarkets to be particularly triggering. I am comparing examples of these experiences from my interviews with scenes from literature/cinema where supermarkets are depicted as disorientating. Through this, I hope to produce a cultural history of vertigo that demonstrate a little of what it is like to live with. So far I have interviewed about 20 people, so it is still very early days, but part of what I am thinking about is why vertigo seems to be so little understood, and often so invisible when it is such a common condition. Hope this helps a little. Happy to answer more questions, of course.

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Can you you clarify what you mean by using the word vertigo? I’ve noticed there is a tendency for some people to use it interchangeably with vestibular disorder. But not everybody with a vestibular disorder experiences vertigo. I certainly don’t.

That is a good question. I mean the dizziness/spinning sense of vertigo, which I associate with my Ménière’s Disease. But I have spoken to people whose vertigo is caused by a range of different conditions.

Sounds like you do mean the symptom of vertigo then, but I feel the need to clarify there is difference between vertigo and dizziness. Vertigo specifically refers to the perception that either the self or the environment is moving, which can be rotary (spinning) or linear. Dizziness is a broader term that encompasses vertigo but also all the other difficult to describe sensations people get when there is something wrong with the balance system. I have Unilateral Vestibulopathy which causes me a lot of dizziness but I never get vertigo.

You may already be aware of this but the Bárány Society are in the midst of a proper classification of vestibular disorders.

https://jvr-web.org/icvd#icvdpapers

Their first paper was on a classification of symptoms.

https://content.iospress.com/articles/journal-of-vestibular-research/ves00343

Many thanks for this. I do know (and experience) the difference between true vertigo and dizziness, but as you say it is often difficult to describe, and in my experience the two can co-exist. I have spoken to people whose vertigo is associated with everything from heights to diabetes - am trying to collect as wide a range of experiences as possible. As I am more interested in the cultural understandings of vertigo, it does, in that sense, include dizziness as well as true vertigo.