Rare Vestibular Disorders and How We Treat Them

In this week’s episode of Deep In Dizziness, we explore the reasons a patient would need vestibular rehabilitation therapy for persistent symptoms of dizziness, with regard to postural instability. Specifically diving into some of the rarer conditions, such as Mal de Debarquement. Listen to the full episode below:

What follows is the conversation transcription:

Dr. Nava:

Hello and welcome back to our podcast, Deep in Dizziness. My name is Dr. Chelsea Nava and this is the yin to my yang, Dr. Brooke Pearce. We specialize in leading vestibular diagnostic testing and therapeutic techniques for the dizzy and imbalanced population.

Dr. Pearce:

Thank you. Very exciting. So today’s topic is all about providing helpful resources and education for the dizzy patient. So we continue to do dig into this topic and specifically reasons why a patient would need vestibular rehabilitation therapy for persistent symptoms of dizziness, related to what’s going on with regard to postural instability. So we’re going to be discussing common trends use globally to treat issues affecting the inner ear.

Dr. Nava:

Our special guests for today’s show is Dr. Margie Sharpe. She is a leading vestibular physiotherapist in Australia as well as the Director of the Dizziness and Balance Disorders Center. She is extremely well established amongst healthcare professionals and the dizzy population. She continues to advance diagnostic methods to examine the function of the inner ear and develop science-driven treatment approaches.

Dr. Pearce:

So without further delay, let’s introduce Dr. Sharpe. So thank you so much for being here today. It’s pretty amazing that we’re able to chat with you, us in Los Angeles, you in Australia. So thank you for being here. How are you doing?

Dr. Sharpe:

I’m fine, thank you. And thank you very much for your invitation. It’s a pleasure to connect with like minded people and spread the positive approaches that we have for helping people with dizziness and imbalance.

Dr. Pearce:

I think the more we chat with people locally and globally, we’re really hoping to connect patients. And it is such a passion. Thank you so much for joining us today.

Dr. Nava:

All right, so before we get started, for the listener that doesn’t quite know what a physiotherapist is, can you give a brief overview of what this entails?

Dr. Sharpe:

Yes. we use the term physiotherapist. Whereas in the United States and Canada, physical therapist is the title. We do very similar things. We graduate with a baccalaureate and then can go on and do higher degrees if that’s the direction we wish to take. As a clinician, we can work in the pediatric field or we can work with young adults. Work in mental health. Also, so work in different areas with adults from neurological disorders, head trauma, road accidents. Then there’s orthopedics. It’s a very rich field in which we can go into sub-disciplines. So yeah, I have always had a passion for brain behavior, relationships. And hence, I’ve worked in the neurological field for a good many years now. I just decided that I really liked the sub-discipline — neuro-otology. So it means more to people, I think, if we say vestibular therapy, vestibular therapist or physiotherapist. Rather than a neuro-otologic physiotherapist.

Dr. Sharpe:

But it’s really the border between the brain and the ear if you think of it that way. So very similar to you. Our healthcare system is different, but that is irrespective of what we do and we’re registered as well.

Dr. Nava:

All right. So you’ve been treating dizzy patients since the early eighties. What’s your story behind this? In other words, how did you become interested in this specific patient population?

Dr. Sharpe:

As an undergraduate, I vividly remember becoming interested in the vestibular system. There was something about it that attracted me and it just stayed with me. And I reached the point, I did a fellowship at Boston University Sargent College some years ago and it was postgraduate work. And there was a very rich environment and my passion for the vestibular system really came to life because across the river, the Child’s river, there was MIT.

Dr. Sharpe:

And some of the famous scientists actually worked or had worked at MIT and a little down the river was Harvard University. And that was another exciting area where there were vestibular clinicians and these were all medical and non-medical people such as Dr. [inaudible], who was the first generation of bio-engineers. So that really sealed it for me. This is what I wanted to do. It’s very exciting. It’s challenging. And I like problem-solving. I just found it a fascinating field and we’re still learning. Most of the work being done that’s pushing the barriers is by medical people and vestibular scientists. Ian Curthoys. Professor Michael Halmagyi. He’s a clinician and works with the Professor Curthoys.

Dr. Sharpe:

Every year I’m going and spending time at conferences dedicated to the dizzy patient. So it’s exciting. And I like learning new things and then taking them with me to implement in the clinic.

Dr. Pearce:

Now in your clinic, what are the top three or four diagnoses for your dizzy patients that you see?

Dr. Sharpe:

I would see many people who have benign paroxysmal positioning of positional vertigo. That’s the most common vestibular inner ear disorder. I also see many people who have a vestibular migraine. That was unheard of some years ago and considered rare. And we now know that that is not the case and it has been accepted by the international Headache Society. So that’s helped everybody. And I also see vestibular neuritis. I see many different types of people. The other condition is a bilateral vestibular failure that frequently goes missed because those people don’t complain of dizziness. They have balance problems and they just, like many dizzy patients go from one practitioner to another to another searching for questions and feeling very frustrated.

Dr. Sharpe:

Then a rare condition Mal de debarquement that is prolonged due to passive motion, could be on a boat, motor vehicle, train travel. I see those people and I use a protocol devised by the late Dr. Dye from Mount Sinai in New York City. He and his team collected a lot of data over time. And since then Viviana Mucci has done a lovely study with sham controls and found that her results concur by and large with Dr. Dye. And it’s not a placebo. It does work. Yes. But because it’s rare, I don’t see those patients every week. But people come from all over Australia and New Zealand for treatment.

Dr. Pearce:

Now in your clinic, what type of testing are you doing to diagnose these patients in the clinic?

Dr. Sharpe:

I work with a virtual team. I have an excellent clinical psychologist. And also ENT specialist. In South Australia, we do not have a neurologist who’s trained in neuro-otology. Nevertheless, I’ve got those people in Melbourne, which it’s not very far away, 50-minute flight. And then in Sydney, which is something like a two-hour flight. So Melbourne works much better. Most of the time. BPPV is fine. I’ve had video friends, with goggles for several decades and I use those so my patients because the whole eye tests and pick up many other forms of nystagmus. So it’s really handy. And BPPV, by and large, is straight forward. Sometimes there’s a tricky case. But because I can record I can always send that quickly with modern technology to a colleague, say in Sydney or in Melbourne and get their opinion.

Dr. Sharpe:

Vestibular neuritis that I do have the otometric suite of programs that I’m able to run. I’m not able to do audiology, I’m not an audiologist. And so I refer people to an ENT who can do the audiology. It’s like sometimes someone comes to me because I don’t need a referral from a medical practitioner and they’re actually having an acute episode and it would appear to be Meniere’s Disease. I just like a quick phone call to an ENT and say, I have this person with me and I believe this is what’s happening. And would you be able to see them? So that has worked very well. And Adelaide’s very small. It’s just over a million people. So it’s not like LA or NYC.

Dr. Sharpe:

I do have patients who are dizzy but in fact that dizziness is related to mental health issues. And that’s where I reach out to the clinical psychologist who’s extremely good and understands vestibular problems so patients don’t have to coach him. This is what Meniere’s Disease is. So that works really well. So I can do balance tests. The history is the most important — to sit and listen to the patient, be on the same page. They can be shy to describe things because they think I’m going to think of them as being silly because I’ve experienced that before. Or that wouldn’t happen. But you know, I say just tell me because that can help me help you. So I find I get a huge amount of valuable information from the patient and then it’s really checking your hypotheses like the history strongly suggests it’s BPPV.

Dr. Sharpe:

Do the gold standard tests and you’ve got BPPV generally. But you need to check that it is BPPV and not just go, “Oh, well I think that is, and I’ll just go ahead and treat it.” So I don’t do VEMPs. VEMPs are very popular in Australia. The Sydney group develop to C VEMPs and O VEMPs. I don’t do those. I think that the majority of people I see, I can work out if they need to have further tests that I can’t do.

Dr. Nava:

In regards to, kind of going back to that Mal de debarquement syndrome or other dizziness related conditions. How do you incorporate your use of optokinetic stimulation for treatment?

Dr. Sharpe:

The protocol that the late Dr. Dye organized was the person is exposed to a total display of black and white stripes that are moving.

Dr. Sharpe:

And whilst the stripes are moving — they could be going like a huge wall — it incorporates their peripheral vision. And whilst they’re just looking straight ahead, the practitioner moves their head slowly side to side and the exposure varies. What I have found is a limited exposure with the stripes going left to right. And then next trial they go right to left. And it can make people very ill, so it’s better to just start off very slowly. I can give you the papers if you wish. So that you can see the set up and the publications have got very nice pictures as well. So it’s not sort of a wheel — where you look at a wheel spinning around. I have used that for years when people are very visually oriented to the point that it’s counterproductive.

Dr. Sharpe:

So getting them to stand on different surfaces and move on different surfaces whilst looking at this moving wheel. And that too can make people feel very uncomfortable. But I’ll alternate it. I won’t go all one way or all the other. I alternate clockwise and counterclockwise. So, I don’t know if that is helpful to you, but the treatment of MDD is the use of optokinetic stimulii there is very different and based on physiological principles. We do not know at this stage what causes it. That will help us immensely. But we now have a treatment that honestly does work and sometimes you do feel like the fairy godmother. You just sit there very quietly. And the patients goes “Ah.” You do some exposure. Then I’ll say, “no, just go down to the mall and walk around and I’ll see you back here in 15 minutes.”

Dr. Sharpe:

And I just wait patiently. And they come back and they say, “Oh, you know, I could stop at the traffic intersection. I know I wasn’t moving around. I was still. So still.” And their faces light up. Clinicians, we’re all the same. I think you just get so excited when something has been helpful. Because that’s why I’m doing this. It’s nice to help people and it’s lovely to see good results.

Dr. Pearce:

Now in your clinic you refer back to Dr. Dye’s protocols. With that specific patient example, are they coming in for 20 minutes a day, five days consistently? Or what does that look like for you and your patients?

Dr. Sharpe:

For those people, they come for four consecutive days and then there’s two hour time slots each day preferably at the same time of day. And they’re exposed to the stimuli and then it depends on the patient, how much exposure.

Dr. Sharpe:

And then they go and do some homework, like walking around and different things. So it’s not sitting down in front of the stimuli for two whole hours and having your head moved. It’s intermittent breaks and a lot of it does revolve around the patient and their tolerance.

Dr. Pearce:

Now, what innovations cause that, that’s pretty phenomenal. And I know that that’s a recent advancement, what Dr. Dye and his team was able to put together and hopefully going to become pretty mainstream. What innovations throughout your career do you think have been the most beneficial for the dizzy community in regards to diagnosis and treatment and therapeutic options? Because it sounds like that piece of the puzzle is a big one. Is there anything else that comes to mind for you with regard to the dizzy patient overall?

Dr. Sharpe:

Yes. I think the greatest advancement is that we now have what I would call a vestibular gram. I used to look at the auditory gram and go, this is such a nice chart. It’s international. Everybody understands that who’s been trained. And we just didn’t have anything like that. We had the caloric testing. We don’t do rotary chair work in Australia and many patients complained how uncomfortable calorics could be and some would refuse. So the head impulse test, which was developed in Sydney, slowly, I watched it being developed over decades and just the bedside was amazing to have that. But now we can do better and it’s objective. So, and not only that, but there are some also C VEMPs and then came the O VEMPs. So at this point in time we can check all the canals and the saccule and utricle. And I think that is just a huge leap forward. I know not all countries do C VEMPs and O VEMPs and there’s lots of discussion. But you know, I see it as a huge positive and just the head in post test alone is far more comfortable. And you can retest, but you won’t be able to retest someone on the caloric for good reason.

Dr. Sharpe:

So I think that’s really a great leap forward. Also, because of technology and the advances, we are able to find things and learn more about the vestibular system itself than ever before. And I know when I first started in the field, BPPV was the posterior area. Can now and that was it. And then at meetings I would hear a neurologist present lateral, horizontal canal BPPV and gradually we’ve come to realize that it can affect all three canals and having friends or goggles has, has made a huge difference. Professor hallmark, he just said to us in a conference one day, cause he’s a great teacher as well. And he just said, “you know, if you’re serious about this work, then you need these goggles.

Dr. Sharpe:

So that you can see the vestibular system working in its pure form in the dark. My career has been enriched by people like Professor Halmagyi, Ian Curthoys, David Z, many other people. Because of their experience and they’re always asking questions. So there are some of the things I’ve seen. I think having something for MDDs is great. Where we haven’t started our research project, but we’re wanting to look further into visual induced dizziness. And working with Dr. Viviana Mucci and Dr. Sharon Lee Brown and their scientists and I’m confident we’re going to find new things. And if it’s not that these people will have additional problems that’s causing VID then we will know that if they are normal on these other parameters, we’d go, “okay, it’s something else.” So whatever happens, it’s a win win situation.

Dr. Nava:

Going back to those patients that aren’t necessarily improving from your treatment or the optokinetic stimulation, if they’ve been diagnosed with mal de debarquement, what are the next steps for treatment that you do for this patient population?

Dr. Sharpe:

That’s a good question. It’s common amongst people with vestibular disorders to have high levels of anxiety, can be depression. They may have had mental health issues before they had a vestibular problem. On the other hand, I think some people develop mental health issues because they are struggling to find someone that can help them and they’re just hitting a brick wall every which way they turn. It works very well with most cases. I can, sort of through chatting with patients, suggest seeing Anthony, the clinical psychologist. The majority of people will take that up. But there are always some who don’t. And all I can do, I always right to the patient’s general practitioner where the, they have just come to me without a referral because we can do that here in Australia in physiotherapy. Suggesting other things.

Dr. Sharpe:

Many people with MDDs do have not only MDDs but significant anxiety and depression. And that requires specialist treatment that I’m not a psychologist. Neither am I a psychiatrist. So trying to move them in a direction that’s most appropriate for their needs. But you know, you can lead a horse to water, but you can’t make it drink. So we get the hard patients and that they don’t want to do anything. They’re complaining. Talking with psychologists, it sounds like in some cases the disease has become the person’s identity. And that is all tied up with psychology and we’re limited in what we can do. But I just feel it’s important that from my perspective and philosophy is no point having them come and using vestibular therapy as a crutch when in fact the problem is not a vestibular problem.

Dr. Sharpe:

I think you just so eloquently walked through utilizing the resources that you have and the specialty that you have and using a multidisciplinary approach. But if they’re not willing to leverage that, you get into a no man’s land where you’re not able to get them what they need –which is overturning them to a presymptomatic state. Now as far as innovations, I think you have some really exciting things that we chatted about the V hit and really what’s going on with the VID component. Is there anything else with regard to innovations that you feel are on the forefront that you’re excited about with regard to treatment or even with regard to just the dizzy patient in general?

Dr. Sharpe:

I’m working with a group in Germany on a dynamic balance assessment tool. And so I was there last year and it’s nearly ready to be shared with the rest of the world. And it’s simple. It’s very easy to use. You wear this little belt and you can walk around so you can get people standing, doing the rumba for example. And then you can get them just walking. You can put them onto the tandem gait tests, standing on one leg. But even moving around, you can put them in their kitchen and get them moving. And look at their balance. That I believe will be excellent when we have it because static testing is one thing and it’s helpful. But so often falls are happening when people move and I know there are falls, unconscious, collapses, et cetera. Many times people are moving and they fall over. So I think that that’s going to be a really wonderful tool.

Dr. Pearce:

What I think is a really interesting statistic in the United States is how many specialists that these dizzy patients will see before they’re actually diagnosed. And so depending on the literature or the site that we source. It can be between four and five different specialists. Are you finding the things in Australia and the frustration level that these patients have when they hit your door or come into your clinic?

Dr. Sharpe:

Yes. they have been searching and they’re genuine people. They’re not what we would call doctor shopping. They really have a problem. I would say a good 96% of the people who see me are self-referred. Word of mouth.

Dr. Sharpe:

They’ve given up. Stemetil is an antiemetic used here a lot. They’re given Stemetil in order to help the dizziness and help their balance. Well more people are just questioning the general practitioner now saying I’m not nauseous, I’m not vomiting, I am not dry reaching. Why give me that? And they check the internet and they say yes and it makes you dizzy. It makes them lightheaded. And it can make them drowsy and it’s not going to do anything for vestibular problem, unless there other vegetative symptoms that need to be dealt with. So we see that a lot. And now, and again, the betahistine Serc is used. It’s a lot more expensive. It’s not on the public drug list that is generally only used with many of these patients.

Dr. Sharpe:

But sometimes it does work for people who have been vomiting, but it’s not going to resolve vertigo. There’s more patient education to do. But there’s a lot more education to do at the level of our general practitioners because they give people, Brandt-Daroff exercises to go home and do, and they haven’t even done a Hallpike maneuver to check. And I don’t use Brandt-Daroff exercises. It’s superseded. And then the patient has heard from someone, they come to see me. I tried that and it made me so sick I gave up. I didn’t do it again. I said, good, just put it in the bin. And I, if I had vertigo, there’s no way I do. Having had vestibular neuritis a long time ago, I wouldn’t do it. I think we just have to work, keep working at getting the message out. Because the same problem is occurring in Europe, so it’s not isolated. You often feel isolated, but it’s good when you talk to other people outside of your state and country.

Dr. Sharpe:

Yeah. And the other thing that we, I find is that everything is BPPV. I know it’s very common, but or they roll over in bed and they get dizzy. So the general community think that vertigo is a disease when it’s a symptom. And vestibular migraine can mimic BPPV — mimic Meniere’s disease. And so you’ve just gotta be so careful and that’s not certainly not appreciated by other therapists in what we call the musculoskeletal area. They don’t have what I call a neurological mental set. It’s black and white. And so they think, “Oh, you just turned the head, dah, dah, dah.” That doesn’t really work like that in the clinic. And they just think they must’ve seen some nystagmus and treat the patient for BPPV when in fact it’s not always BPPV in the ear.

Dr. Sharpe:

So there’s a lot we all have to keep doing. I think all of us that are passionate about the field are going to continue repeating the same message in different ways to different groups. And I think the patients want to learn and they like to ask questions and it’s important to answer them. Often general practitioners don’t. They’re so busy. Medical specialists don’t. And I think if patients are demanding, that’s a very good impetus to keep because the change will come from outside, not inside necessarily. Often it’s the outside pressure. And the cost. People have all these head scans this and that and it runs into hundreds and hundreds of dollars. And you think, well if you just did a Hallpike maneuver or sent the person — I get a number of GPs and others that will send people to me to screen — but if you just did that, it would be much less expensive to the person and to the public purse. But no, they, they do what they do. So there we are.

Dr. Pearce:

Yeah. And I think it’s exciting, like you said, to really make sure that the people who are passionate and knowledgeable have a platform. That’s why we were very excited to share some time with you, hear your experience, and what you’re providing to your patients down in Australia. And really continue to echo the message that you’ve demonstrated your entire career. So yeah, we really appreciate you spending some time on our podcast. And we would love to have you back as we start to get things rolling because I think there’s so much knowledge and so much information that you can continue to share. So where can people find you? What is your website?

Dr. Sharpe:

The website is www.dizzinessbalancedisorders.com.au

Dr. Pearce:

Perfect. Perfect. Thank you so much, Dr. Sharpe. We appreciate it and we are going to sign off. So thank you so much to our listeners for diving Deep into Dizziness with us and with the world-renowned Dr. Margie Sharpe.

Dr. Sharpe:

Thank you very much. It has been most enjoyable. Bye-bye.


Do you often feel dizzy? Do you think you might have vertigo? Is your lack of balance throwing off your entire life?

Well we can help! The Dizzy & Vertigo Institute specializes in changing people’s lives by finding solutions to their dizziness symptoms.

Visit our website, schedule a consultation with us here, or call us directly at (310)954–2207.

Dizzy & Vertigo Institute

Written by

Improving the outcomes of patients with chronic dizziness, vertigo, and other vestibular problems. Visit our website for help: https://www.dizzyandvertigo.com/

Dizzy & Vertigo Institute

Improve your balance. End your dizziness. We’d like to help you in person, but we’ll happily assist you through our writing first.

Welcome to a place where words matter. On Medium, smart voices and original ideas take center stage - with no ads in sight. Watch
Follow all the topics you care about, and we’ll deliver the best stories for you to your homepage and inbox. Explore
Get unlimited access to the best stories on Medium — and support writers while you’re at it. Just $5/month. Upgrade