The Current - Why Canadians need more help dealing with dizziness

Episode Date: October 7, 2024

Some Canadians deal with spells of dizziness that can last hours or even days. But experts say there’s a lack of understanding about the underlying causes — and millions aren’t getting the treatment they need.

In 2017, it felt like drugs were everywhere in the news, so I started a podcast called On Drugs. We covered a lot of ground over two seasons, but there are still so many more stories to tell. I'm Jeff Turner, and I'm back with Season 3 of On Drugs. And this time, it's going to get personal. I don't know who Sober Jeff is. I don't even know if I like that guy.

On Drugs is available now wherever you get your podcasts. This is a CBC Podcast. Hello, I'm Matt Galloway, and this is The Current Podcast. Most of us have experienced a bit of dizziness at some point in our lives. Maybe you've spun around too quickly dancing, maybe you're playing a sport and you felt a little dizzy after. Imagine that isn't just a passing sensation, but the dizziness just won't go away. It is estimated that a quarter of all Canadians will deal with longer episodes of dizziness at some point in time in their lives, sometimes for hours, sometimes for days or even longer. And that dizziness usually means there's something wrong with their vestibular system.

It's your inner ear. So it keeps your balance in check. Joyce Pinsker knows this all too well. Joyce, good morning. Good morning. Tell me, if you would, about your first episode of dizziness. What happened? It was Christmas, and I was bustling around getting ready, bent over to get something out of the bottom of the fridge, and I was instantly really, really dizzy and had to sit down on the floor. I mean, I couldn't walk. And it passed in about a minute, and I thought, hmm, what's that? Didn't think too much more about it. And then a couple of days later, I was in bed rolling over to get something down on the floor. And there it was again, instant spinning as though the room was spinning around me and quite an alarming feeling. So I went to my doctor at that point to see what might be wrong.

Can you just describe a little bit more of what that alarming feeling was like? Could you just describe a little bit more of what that alarming feeling was like? It was a feeling as though either the room was spinning around me or I was spinning around. It's hard to sort of determine between those two, but definitely this rotary feeling. And when that happens, it's impossible to stand up or walk. You just can't do it. And if you have no idea what's going on, it's alarming. What did you think was happening? I mean, again, those are two pretty routine, mundane things.

You reach for something in the fridge, you stretch out of the bed to pick up something, and this happens. What did you think was going on? I really didn't know at that point. I was otherwise very healthy, so I thought, I'm not speculating what's wrong, I would go to my family doctor. And when you went to the doctor, what did the doctor say? Well, fortunately, my family doctor was very experienced and I think had probably seen quite a lot of this. And he put my head through a position, instant vertigo, and he says,

ah, you have BPPV, and proceeded to explain to me what that was all about. BPPV. Yes, BPPV, and thank goodness there's that acronym. It stands for benign paroxysmal positional vertigo, so the benign meaning it's not going to kill you, paroxysmal positional vertigo. So the benign meaning it's not going to kill you. Paroxysmal, fancy way of saying it comes and goes. Positional, it means you need to be in a certain position for it to happen. And the vertigo referring to that spinning rotary sensation that lasts for about a minute. Having diagnosed you with that mouthful, what did the doctor do?

Were you sent off to a specialist? He said he could try to treat me in the office, but it would be better for me to go to a specialist vestibular therapist. So I went to a physio who had specialized training in dealing with vestibular disorders, and she was able to determine which of the semicircular canals in my inner ear were affected by this and put my head through a series of maneuvers which were able to return what was a crystal or a little piece of calcium carbonate that had fallen out of where it

should be in my inner ear and had floated into my semicircular canal. And it's hard to believe such a tiny thing can wreak such havoc, but it can. That was the sense as to what had led to that episode, that little piece of cartilage. Exactly. This tiny, tiny bit of crystal. Years later, you had another occurrence. What happened when you went to the doctor after that episode? Yes, that was much stranger and a bit more alarming. I went to the doctor because I had a relatively sudden feeling that I just was floating above the ground and that things would sort of turn upside down. things would sort of turn upside down.

And I went to the doctor and immediately was sent to emergency because the locum who was on duty thought I was having a stroke. And I ended up in emergency for, oh, the whole day and had every test known to mankind, it seemed, including a lumbar puncture. It was quite an ordeal, and they couldn't figure out anything at that time that was wrong. So fortunately, my family doctor, who I went back to see, is quite persistent, but it did take a number of months before I was able to get in for expedited testing of my inner ear, he immediately thought this was an inner ear problem. I, of course, didn't because I wasn't spinning, but that was when I learned that

dizziness means all sorts of different things, and this sensation that I was feeling, he thought was coming from my inner ear, which indeed, when I finished the testing, it showed that there was something wrong with one of that very tiny sensors inside the ear that detects really your sense of up and down and gravity. And as I say, it took quite a while for that to be sorted out. What were you eventually diagnosed with that time? sorted out. What were you eventually diagnosed with at that time? I didn't have a named diagnosis at that time. I think, you know, as humans, we like to have names for things, but there was nothing ever particularly named at that time. In retrospect, I believe that what I had, that initial injury to my inner ear, had morphed into something that now is called triple PD, or some people say PPPD. And that is when you have, sometimes happens after people have a dizziness problem that lasts

for a number of months, and they start adding on other problems such as anxiety and depression and a variety of other components because it's extremely unnerving and very unsettling to have a sensation where you just basically don't know where you are. It sounds very strange, but that was what I was dealing with. I couldn't figure out where I was in space. What impact does that have on your daily life when, as you said, you don't know where you are? Well, I ended up missing the better part of a year of work. It became so challenging for my brain to try to cope with this sensation that I really didn't have much left over after I was just concentrating on trying to stay upright. I found it extremely exhausting.

I was not able to concentrate. I couldn't do the simplest of tasks that before I would have been able to practically do in my sleep, like follow a simple recipe. I just flummoxed me. I couldn't figure out the order to do do in my sleep, like follow a simple recipe. It just flummoxed me. I couldn't figure out the order to do things in. It's challenging, very challenging. And is there anything that the health care system can do to alleviate those symptoms? Well, in my case, it was a combination of things.

It wasn't one easy, it wasn't like the BPPV where you could just do a maneuver and there you are ready to go. Vestibular rehabilitation, again, really did help. and having a lot of wonderful coaching from my back-to-work counselor and support from family and perhaps time, patience, perseverance, I was able to go back to work after a year. And how are you doing now? I feel great. Aside from when I'm really tired, I start to just have a little bit of those sensations creep back, but I know what they are. The BPPV has not come back to date, thank goodness, though I do understand that as one gets older, that's more likely. So at least now I'm prepared for it. I think the first time having no idea what was happening, made it way worse.

Once you understand what's happening, then you think, oh, I know this. I can deal with it. And I still do get very dizzy with certain medications like spinning vertigo, but I ask lots of questions of my pharmacists. So I think I'm pretty good to go. Can I just ask you just before I let you go? I mean, I said in the introduction that maybe upwards of a quarter of all Canadians will deal with longer episodes of dizziness at some point in time in their lives. What more

could the healthcare system do to help people like yourself? Well, one of the things that I think really could be done is to reduce wait times, because I've had many conversations with people who are absolutely desperate about waiting months or even over a year for referral to specialists or for comprehensive vestibular testing. I also think that taking symptoms seriously right from the beginning is something that needs to be done by more GPs. Older people in particular seem to be told that their dizziness is, oh, it's just aging, or there's nothing we can do about it. And I think it's important for people not to settle for a non-specialist giving them that kind of feedback. They need to

have better than that. And the last thing I think that could be done is to establish more vestibular clinics that offer everything from initial assessment through objective diagnosis and rehabilitation. That would really help. Joyce, I'm glad you're doing well, and I appreciate speaking with you. Thank you very much. Thank you. Joyce Pensker experiences chronic dizziness, and she was in Vancouver. In 2017, it felt like drugs were everywhere in the news,

so I started a podcast called On Drugs. We covered a lot of ground over two seasons, but there are still so many more stories to tell. I'm Jeff Turner, and I'm back with season three of On Drugs. And this time, it's going to get personal. I don't know who Sober Jeff is. I don't even know if I like that guy. On Drugs is available now wherever you get your podcasts.

So we really got to listen to what the symptoms are, how they affect their day-to-day lives. And for me as a physiotherapist, I need to know how it's affecting day-to-day function. Shillian Solway is a physiotherapist whose specialty is treating people with dizziness. She's on a Zoom call following up with her patient, Tammy Spencer, who's at home home in Timmins Ontario. So let's start with a standing balance assessment okay make sure there's a chair in front of you so that if you lose your balance you have something to grab all right take a deep breath in and let it go you can now close your eyes and hold that balance how does that feel uh it's wobbly but it's. I'm able to stay in place. I don't feel like I'm going to fall. I just feel wobbly. Okay, let's challenge the inner ear a

little bit more. Let's move your head side to side while you're standing there. And then let's try some vertical head movements. Okay, and then open the eyes. The exercises get progressively harder. At one point, Shaleen asks Tammy to walk backwards, which she does slowly and carefully. And this online check-in gives both Shaleen and Tammy a chance to see how Tammy has been progressing since they first met a year ago. I met with her and she asked me all kinds of questions.

And in those questions, I just remember going, how did you know in my own head? How did you know? It was like the first time somebody actually knew what I was going through. I'm not back to normal, but the severity since she's got me on these exercises have improved dramatically. Absolutely. If you're talking back last year, it felt 100% of the time like I was in a very deep dream or highly intoxicated all the time. And I thought to myself, there's, you know, how am I ever going to be normal again?

It felt like I was drowning and I met her. That's when I got hope. I'm like, okay, if somebody understands, then they can help me. And she did. If somebody understands, then they can help me. And she did. Shaleen Solway works at the Center for Advanced Hearing and Balance Testing at Toronto General Hospital. Her mentor and guide is Dr. John Rutka, who leads that clinic. Dr. Rutka is an otolaryngologist, a head and neck surgeon, who has made dizziness his life's work. And he's with me in studio.

Dr. Rutka, hello. Good morning. How common are those experiences that we just heard, Joyce Pinsker and Tammy Spencer? Very common actually and I think if you look at emergency visits, for example, as one way of assessing how common dizziness is, certainly patients who have experienced dizziness are probably within the top five reasons for why people come to the emergency department. Within the top five reasons? Definitely, come to the emergency department. Within the top five reasons? Definitely, yes.

That was certainly some of the work that came out of Massachusetts General Hospital many years ago. I don't think it's really changed. Can we just talk about terminology? We're using the word dizziness. Vertigo gets slid into that as well. I mean, is there a difference between the two? Yeah, there is. And certainly at a physician's level, we like to distinguish the difference.

Dizziness is a ubiquitous term. It can mean anything from giddiness, lightheadedness, a sense of falling. Where vertigo is quite specific, it usually is an illusion of movement or hallucination of either you or your environment moving. And so generally speaking, when that happens, it usually implies that there's some abnormality involving the vestibular system. Most of the time it's from the inner ear, but sometimes it can be from the central nervous system, vestibular pathways. What do you hear when patients get to your clinic in that state?

What do you hear from them about how their life, when one of the things that we heard from Tammy is, you know, she wanted to be normal again. Joyce talked about how she didn't know where she was in the world. What do the patients tell you about where they are? Well, that's some of what they tell us, but really they're pretty devastated by the time they come to see me because I'm a quaternary specialist. Usually they've already seen their family doctor. They've seen maybe an internist. They've seen a neurologist.

Who knows who else they've seen. And by the time they get to you, it's serious. Well, by the time they get to us, they're pretty damaged in a sense. I don't mean in a bad sense. It's just that they've been through the health care system. They've had numerous tests done many, many times. They've had the scans. the healthcare system. They've had numerous tests done many, many times. They've had the scans.

And that's one thing that our governments have done, I think, in a pretty good fashion is that they've actually made it such that most people can get a scan, you know, in a reasonable time frame. And that's really important in ruling out central nervous system pathology. And then when that happens and you've excluded stroke, brain tumor, for example, then we can look at these individuals and try and treat them, help them get them better. But, you know, Sir William Ulster used to say, you know, to treat a patient is diagnosis, diagnosis, diagnosis. And so that's what you have to have. And you get that really by taking a good history from the patient and doing a very good examination, then doing the objective test, as Joyce was saying. But as you said, they're pretty damaged by the time they get to you. How has their quality of

life been impacted? Oh, very much so in the sense that, yeah, they may not be at work. They're fearful. They're going to have another dizzy attack if it's episodic, for example. It ruins their quality of life in terms of recreational activities. Can I go on a plane, they'll say. Can I go on a holiday? Is this going to happen? Can I work in heights?

You know, if you're a construction worker, for example. So these are things that can affect people. Do we know what's going on? What would lead to that kind of bout of dizziness? The answer is I think yes, with a careful examination. Certainly a good careful history, physical examination, and then with the test, we can have a pretty good idea of what's happening. The corollary is, however, can we always treat someone? And I think that's important because, you know, dizziness, it's complicated.

That's just the bottom line. It can be the result of, for example, medication effect. It can be the result of inner ear, central nervous system pathology. It can be the result of magnification of symptoms in patients who may have mental health issues. So, you know, it's a very complex field. How difficult is it to make an accurate diagnosis then? I think pretty much we know whether something's serious or not. And then in terms of what could be going on, if it's a straightforward situation that Joyce had when she initially talked about her positional vertigo, that's actually quite simple.

However, the latter part of Joyce's talk today when she talked about, you know, feeling unsteady on her feet and the world going up and down. There can be reasons for that. And that's a very complex problem that Joyce had, actually. But you said you have to be a little bit like Sherlock Holmes to try and piece all the parts of the puzzle together. You have to put it together. You leave no stones unturned. No question about that. If this is, as you said, one of the most common reasons why somebody comes to the emergency department, why don't we know more about this? And why isn't there at the very least more effective help readily available? Well, I guess at the end of the day, it doesn't have high optics as far as the government is concerned.

That's one reason possibly. What do you mean about that? If those numbers, I mean, in the United States, they're saying that something like 5% of the American population suffers from chronic vestibular conditions. Those seem like very those are high numbers yeah and the health care costs are huge too when you look at it no what the thing is i think is that you have to realize like many things like headaches for example

dizziness is one of those uh situations where it comes and goes in between attacks or bouts you may be quite well and then you have an attack and you may get worse and then you get better again. So it fluctuates. It goes back and forth. And so many people either learn to live with it or, in a sense, there are just some times in their life when they're bothered by it. You're right. When we say about chronic dysentery, we're talking about emergency visits to the ER. That's usually when you have an acute attack of vertigo. You don't know what's going on. Then you go to the emergency department because you're afraid you're having a stroke or something more serious going on. But as a general rule, many people live with it.

It doesn't seem as serious. It doesn't seem certainly to have the same optics, for example, as we have with cardiovascular disease, transplantation, head and neck cancer, cancers anywhere in the body, so on and so forth. So I think that's one reason that we look at. one reason that we look at. And another reason we may not have high optics is I'm not sure that we actually have what I would call a good patient advocacy group that really wants to push the government on this because this is really, really important. That's how you get their attention. That's what the government looks at.

They look at the optics of what's going on in the community. And I think if we had more people that were pushing forward saying, listen, no, we're not going to take this anymore. We want to do something better to see what we can do to improve our qualities of life and certainly to let us do things we want to do. I think that would be very important, in my opinion. Joyce Pinsker said that one of the things she wanted from the healthcare system was for that system broadly to take people's symptoms seriously. How often are those symptoms either misdiagnosed or dismissed or not taken seriously? symptoms either misdiagnosed or dismissed or not taken seriously?

Oh, very often. And it probably came even worse during the pandemic when all the assessments were virtual. You know, when you examine a patient, it's physical contact. You have to be there. You have to examine them. You have to see what's going on. And Joyce's situation, she was found to have the condition because she was actually positioned. And they saw the abnormal eye booms and said, yes, this is what your diagnosis is. And you need that. You need to actually have your hands on the patient to be able to. Yeah, but in all fairness, like family doctors have five to six minutes with each patient that they see. That's statistically what they have.

They don't have time to sit there and take a detailed history, which often takes, you know, anywhere from 10 to 20 minutes and an examination another 10 to 15 minutes after that. But she also said it's about, I mean, as she said, I mean, somebody who's older and those symptoms are dismissed. This is just a factor of getting older. This is just something that you said you're going to have to live with. You do it at your peril. That's all I can say, because people, as they get older, still have pathology. It's not just because they're getting older. As a matter of fact,

we know that in the sense that you may actually predispose people to falls, fractured hips. In other words, you really create more problems for the healthcare system if you don't look after things such as dizziness. The cost of that, of ignoring it or dismissing it, could be substantial. Oh, but it is. It is. So your clinic has a variety of specialists. What sort of treatment do patients get at your clinic? Okay, so we have a very unique clinic in Canada. It's probably the only one that I can think of, maybe even in North America as well, too.

It's a multidisciplinary, we call it Neurotology or Dizzy Clinic. And it has morphed from really the early 90s when we started working in conjunction with our division of neurology. And over the last, I'd say, 20 years, we have developed really a multidisciplinary clinic, we call it the Hertz Multidisciplinary Clinic. And we actually have a number of shareholders in it. There are people like myself who are neurotologists who specialize in dissonance. We have neurologists that work with us. Most important, we have our fellows and we have residents that learn from us when we're there. And what we have added as well, too, is a physiotherapy component.

So Shaleen Asalway, who was just talking recently, mentioned what they can do and how they can help people. And then I think probably the more important aspect that we had is that we actually identified that many people do have problems in a sense with mental health as well. I don't mean in a bad sense. It's just that they're very bothered and sometimes their symptoms can be amplified. Sometimes you need to have a vestibular psychiatrist or a neurologist, neuropsychologist dealing with them to help them along as well, because we're all physical and psychological to some degree as patients. And I think the most important aspect is that we have continuing care to a nurse who is able to get in touch with patients on a regular basis to see how they're doing and making sure

that they are known, that they're not falling off a cliff, that there's someone there to look after them and will continue to be there for them. Can you just tell me a bit more about having the mental health component there? I mean, again, we heard earlier about that idea, I just want to be normal again. That's the kind of thing that could impact you well beyond, and it's not a comparison, but well beyond your physical health. Yeah. So we know that there are people, for example, who may have a vestibular balance loss.

What happens then is most of the time they compensate. Sometimes they don't. And physiotherapy is designed to try and promote what they call compensation at the level of the central nervous system. Sometimes people don't do that. And sometimes there are stressors, for example, in their life that may magnitude symptoms along with what happens to them. And then you get into a vicious circle, basically. And so the treatment is not just physiotherapy, but it's looking at, well, how else can we help them? It could be anything from cognitive behavioral therapy. It could be anything from trying certain medications that may actually just take the edge off some of the symptoms that they're experiencing. In other words,

we dial down the electrical tone that's going on. But it's really important to have someone deal with them because when you find that they have dizziness, it's not just dizziness, they have other things in their lives that are going on as well, too. So all of a sudden, you've mushroomed into major issues for these people. And this is really quite well-known, for example, after head injury. It's well-known if there's medical legal actions, for example, as well, too. There are other things that go on as well, too. Are you generally able to let people leave with, I mean, again, it's that idea of feeling normal again. Something dramatic has happened, that their balance in the world is off, and that they

don't know where they are, they can't walk properly, that their life has been altered. Are you generally able to see people out and feel as though they're better off? That they're not cured, but certainly that that has been addressed in a meaningful way. Yeah. I think what we do in the specialized clinic that we have is we do a full assessment of that individual. We leave no stones unturned and we let them know exactly what we think is going on. But with the data, you know, from the examination, from the lab tests that are done, from the

imaging that's been done and from all the assessments. So we can give them really a holistic appraisal of what's happening. Now, there are some things that we can help, and there are some things we can't help. But I think that overall, the experience has been very positive. Patients want to know what the problem is. That's really important for them. Many of them can cope with their symptoms knowing that there's nothing serious and this is what the issue is.

Yes, and we can provide certain treatments for them that may help them. Can I get them back to normal 100%? Maybe not, but we can certainly help them a lot. The wait time to see you is what, two to three years? It is, yes. So what advice do you have for people who are listening to this elsewhere in the country, who they hear you, they're going to call you, but the wait time is going to be some time, and they're suffering from this now. What advice do you have for them right now? Well, I think the most important advice is obviously they have to get a specialist opinion somewhere along the line, someone who knows a bit more

probably about the sensation of dizziness and the pathways that are involved. Usually that's at the level of an internist, a neurologist, for example, or an ear, nose, and throat surgeon who've had some training in those areas. I think it's also important that if there's any concern about something more serious going on, they have to have some imaging done. And that will be at the level of those doctors as well, to range for that. And then after that, it's a question of, well, if they don't get better, well, why is that? But as I mentioned earlier today in our broadcast, many patients who have dizziness is episodic. It comes and goes. It doesn't bother them necessarily all the time. They know that they'll get better, so they kind of live with their symptoms. They may not be a burden on the healthcare system if that's the

case. But in those with the chronic problems, yeah, they have to be looked after very carefully. Is your sense just finally that we're having a better conversation about this, that we're actually talking about this more and in a way that actually addresses the seriousness of the situation? Well, I hope we will. I mean, like we've seen what's happened with, you know, with Bell Canada talking about the mental health issues and perspectives and initiatives. I would hope something like that would happen with regards to dizziness as well too. But again, we need patient advocacy, you know, to drive that envelope really to the level of the government, you know. Glad to have you here to talk about this. It's a familiar sensation for so many Canadians.

Dr. Rutka, thank you. Thank you as well. Dr. John Rutka is an otolaryngologist, head and neck surgeon, and he leads the Center for Advanced Hearing and Balance Testing at Toronto General Hospital. What is your experience with dizziness and vertigo? And if you suffer from it, what kind of treatment have you received that actually worked? You can email us thecurrentatcbc.ca. For more CBC podcasts, go to cbc.ca slash podcasts.