This is a transcript from the 2022 Life Rebalanced Live (LRL) Virtual Conference on the topic of Neurological Symptoms associated with Long-haul COVID-19. Learn more about this annual conference at vestibular.org/LRL.
Dr. Danielle Tolman, PT 00:01
Welcome and thank you for joining the Vestibular Disorders Association day two of our second annual virtual conference Life Rebalance Live. I’m Dr. Danielle Tolman and I’ll be your host alongside my partner Dr. Abby Ross. We are vestibular physical therapists with Balancing Act Rehabilitation, members of VEDA’s board of directors, and self-proclaimed Vestibular-holics.
Dr. Abbie Ross, PT, NCS 00:24
Yes, self-proclaimed Vestibular-holics indeed. And yesterday day one with Dr. Richard Clendaniel and the patient panel went so well. Thank you all for joining us yesterday, and for being here with us today. We’d also like to thank VEDA’s donors, VEDA’s volunteers and VEDA’s staff members for their countless hours in putting together this great conference. With their contributions, we’re so pleased to be able to provide this conference live for free to our attendees.
Dr. Danielle Tolman, PT 00:52
Now if you do wish to have access to the presentations following the live portion of the event, we will have them available for purchase. Before we get started, let’s give a shout out to our event sponsors. First we’d like to thank our gold level sponsor, the James D. and Linda B. Heyland Discovery Fund and the University of Minnesota Department of Otolaryngology. Jim Halen was the inspiration for this conference having hosted his own in person conference for patients with Vestibular dysfunction in 2018 and 2019. We appreciate his continued support. We’d also like to thank our silver level sponsors Autonomy and Electricore. Autonomy is a biopharmaceutical company that is developing novel therapeutics that address important unmet medical needs across the neurotology field. We’ll tell you more about Electricore later in the week.
Dr. Abbie Ross, PT, NCS 01:41
So day two, our topic today is neurological symptoms associated with COVID-19. Obviously COVID-19 the pandemic it’s greatly impacted all of our lives over the last two years now. But more recently, there’s been greater talk around the neurological symptoms associated with not only the COVID-19 virus, but also the vaccine. So today’s conversation is going to be focused around the neurological symptoms associated with both the virus and vaccine which includes vestibular symptoms such as vertigo.
Dr. Danielle Tolman, PT 02:13
So without further ado, let’s introduce you to today’s speaker, Dr. P. Ashley Wackym. We’ll get him situated over here so you can see him. All right. So Dr. Wackym is a professor and chairman of the Department of Otolaryngology Head and Neck Surgery at Rutgers Robert Wood Johnson Medical School. His clinical emphasis is on surgical rehabilitation of hearing losses including cochlear and auditory brainstem, brainstem implantation, and vestibular disorders. Dr. Wackym earned his medical doctorate from Vanderbilt University School of Medicine. He has published more than 200 articles and books primarily related to otologic pathology and cochlear implantation. He is well known as a specialist in third window conditions and recently co-authored a paper on COVID-19 and audio-vestibular disorders, which makes him the perfect person to talk to us today. Dr. Wackym thank you so much for joining us. Would you please give our audience a little bit of background information on yourself as well as how you ended up in the vestibular world?
Dr. P. Ashley Wackym, MD:
Sure. Thank you. Thank you, Dr. Ross. I’ve been practicing neurotology for over 30 years now. And my involvement in Vestibular Disorders really started when I was a resident at UCLA and spent a basic science research year as a postdoctoral fellow studying gene discovery in the Vestibular periphery. And I was early on shaped by Lacidia Rubia and Bob Bellow at UCLA and I spent 10 years there with my residency and faculty. And then at Iowa, I worked directly with Brian McCabe who was the discoverer of autoimmune inner ear disease and was strong Vestibular physiology advocate. And then I worked at Mount Sinai with Bernie Cohen for four years and spent 10 years in Wisconsin and shared a number of patients with Tim Hain and really got to know him well. And then I went to Portland, Oregon and worked with Owen Black for about seven years. And so I couldn’t help but be exposed to Vestibular disorder patients and and I think one of the most transformative aspects for me was actually just listening to patients because they can tell you really what it is that is the root cause of their problem. But unfortunately, a lot of physicians just don’t listen to patients, which as a patient myself, I’ve experienced that which isn’t very pleasant.
Dr. Abbie Ross, PT, NCS 04:47
Yeah, that’s such a true statement right there. But thank you so much, again, Dr. Wackym, for joining us. Let’s get right into our talk for today. We’d like to start by defining what acute versus ongoing versus post COVID means and then also discuss long COVID defining it.
Dr. P. Ashley Wackym, MD 05:00
Yeah, so all of this, of course, is new. We didn’t know anything about COVID until it joined us a couple of years ago. And most recently, together with Tina Stankovac, who’s the chairman learned neurology at Stanford, who did most of the basic studies, we looked at where the receptors are within the inner ear, to be able to take in the COVID virus and what type of cells can be impacted. And we published a combination of basic research studies as well as 10 patients who had their auditory vestibular system impacted by COVID, acutely. And so I’ll start with that, and then get into the long COVID and some of the other issues. And so we saw a number of patterns. And also comment about vaccines and impact on the inner ear as well. So we saw a few different patterns, there were patients who had endo-lymphatic hydrops (due to) an inflammatory and immune response to the COVID virus itself, causing the inner lymphatic sack, a part of the inner ear that takes up the the endolymph, to be involved. Then the endolymph backs up and becomes hydropic. And so when that happens, it knocks down your gravity receptor function. And so those patients will have a gravitational receptor dysfunction type of vertigo. Also, hearing loss, often low pitched hearing loss. And so in managing those patients, it’s really about the things that can help resolve endo-lymphatic hydrops, such as low sodium diet, diuretic, etc.
And for patients who can’t take pharmacologic diuretics using homeopathic diuretics like dandelion root supplement or, or peppermint tea, or some strategies. Some patients are steroid responsive, and so after their COVID infection over treating them with high dose steroids orally and plus or minus doing it with injections in the ear is one strategy to help with that endolymphatic hydrops. But there are also patients who lost their hearing and had true true vertigo.
And, and there were a couple of patterns with that. So the H2 receptor that is responsible for cell taking in the COVID virus also is expressed within the hair cells of the inner ear. And so those patients whose hearing was wiped out, were likely patients that the virus got into the inner ear, and there are a couple of different pathways how the virus could get into the inner ear. But for those patients, they typically did not have recovery of their of their profound hearing loss. And interestingly, most of them were single sided, although I’ve had bilateral deafness from COVID. And also one patient who had significant sensory hearing loss bilaterally, but it progressed over time, even after her COVID. And she’s now a bilateral cochlear implant recipient.
Another patient was interesting. So when the COVID virus gets into our brain, it gets there through the olfactory nerves, you know, through our nose and the base of the skull. And that’s why there’s a percentage of patients who lose their smell and taste afterward. And also for that there’s some emerging evidence that doesn’t anything to do with the balance system. But there’s evidence that if you take known smells, and smell them every day, such as clove or peppermint rose, those kinds of things do that everyday, twice a day, there’s a higher rate of recovery of smell and taste function. But once that virus enters the brain, it can involve other cranial nerves, and there’s one case report of one of the cranial nerves that controls an eye muscle, the trochlear nerve that was involved.
We had one patient with an MRI, that was one of my patients that had development, the cochlear nerve and the vestibular nerve enhancement on the MRI scan. And I’ve also seen patients where they would have a Vestibular neuritis type of pattern, where they would have unrelenting true vertigo for four to six weeks after an event a few of those conditions and the schwann cells, the insulating cells on the vestibular nerve also express that h2 receptor. So the insulating cells of the eighth nerve itself can get infected with COVID and become dysfunctional and not work and it happens on one side, then there’s an asymmetry. And that’s what causes the true vertigo because there’s a mismatch from each inner ear.
Dr. Danielle Tolman, PT 10:10
So I’m gonna, I’m gonna back up just a little bit, because that is a whole lot of great information that I’m actually learning a lot from and can apply to a lot of patients that I’ve seen. But it sounds like there are multiple different pathways that the COVID virus can either get into the inner ear, or the brain or anything that connects the inner ear to the brain and affect them differently. In the first instance, it sounded like very similar to what people experience with Meniere’s disease, which you also see something called endo-lymphatic hydrops with. Is that right? That’s acting that fluid that fills the inner ear and making that fluctuate, which can cause those attacks of vertigo and then be treated with steroids or low sodium diets. That sounds similar that right?
Dr. P. Ashley Wackym, MD
That’s correct. And when you said Meneire’s, though, I’m going to say something that I always tell patients that Prospo Meniere was a French physician and first made a connection between the Ear and Hearing balance disorders. But he did it the same year that Abraham Lincoln was inaugurated President, and so that that bucket of Meniere’s disease used to be really big. And over time, there have been so many things taken out of that bucket that it’s a pretty small bucket anymore. Yeah. And even though Vestibular migraine you know a third of those patients get endo-lymphatic hydrops as well.
Dr. Danielle Tolman, PT
Yeah, I know, the endo-lymphatic hydrops can be applied over many different types of Vestibular dysfunction, not necessarily just tied to Meniere’s. But I think that our audience definitely can relate to that a little bit, because I’m sure most of them have had at some Meniere’s diagnosis thrown around at some point in their journey back to balance. And then the second instance, you had talked about the virus affecting the hair cells. And those are the little sensors that are in the inner ear, they lie in the cochlea to help us with hearing but also sit at the end of our little canals that sense acceleration of the head, like head turning and nodding, as well as those gravity sensors you had mentioned that hold those little crystals on there so that those can be affected, which sounds like if they’re affected, and we lose those that’s more of a permanent loss and function. Is that correct?
Dr. P. Ashley Wackym, MD
Yeah, that’s interesting, too. So there is evidence in people that and with basic science studies of vestibular end organs taken out of people at surgery that there is some capacity for Vestibular balance, hair cell regeneration, which that’s only happened in the cochlea. So most of those patients that had the sudden hearing loss also had vertigo, but it was short lived and didn’t have that. So I think it is more damaging the Cochlear hair cells. And as to the Vestibular hair cells, at least based on what we know, from the patients who unfortunately had impact from COVID in their ear.
Dr. Danielle Tolman, PT
So then in those two instances, that those are still peripheral Vestibular system, right, so we’re still dealing with sudden onset of vertigo, maybe some auditory complaints. And then you also talked about the cells that surround the nerve that supplies the inner ear. And if that gets affected, that’s also a peripheral issue, causing some of those more severe sense of vertigo and balance, especially asymmetry if it’s not happening on both sides. So aside from those now getting into the brain aspect of how COVID can affect are those symptoms different? Is there less vertigo associated with that and more complaints of imbalance? Or do they pretty much present? Similarly?
Dr. P. Ashley Wackym, MD
Yeah, great question. complicated answer. So, you know, with COVID infection of the brain, there are patients that have had just severe cognitive dysfunction, because of their COVID infection. And our cognitive function is incredibly important, as you know, at maintaining our balance, because our brain has to process both auditory and the Vestibular input to be able to control our body, and who with that cognitive dysfunction, people are constantly having to struggle to understand, to put things together, and it just sucks up the available energy that we have for our brain to function. And if all that has been used up for that purpose, it doesn’t have much left over to maintain our balance and our hearing. So usually, hearing function and balance function goes down so that there’s that aspect of it. We also don’t know, you know, how the brain has been impacted in patients who’ve had peripheral problems because of COVID. It’s really too early to know that in long COVID You know, almost every academic medical center has a long COVID clinic now, but you know, it’s it’s the Wild West because we just don’t know how all that’s going to change over time or how to improve things over time.
Dr. Abbie Ross, PT, NCS
Now, if we define long COVID In terms of time frame, time frame, right, so acute COVID would be signs and symptoms up to four weeks, and we’ve got ongoing four to 12. Post COVID is 12 or more and long COVID really groups in the ongoing and post COVID. So any signs or symptoms that are lasting four or more weeks would be considered long COVID is that correct?
Dr. P. Ashley Wackym, MD
Many defined it that way, yes.
Dr. Abbie Ross, PT, NCS
Okay, and what other neurological symptoms then can we see with long COVID? We’ve talked about a few thus far. What about things like headache, for example?
Dr. P. Ashley Wackym, MD
Yeah, great, great question. And I’m sorry, I didn’t mention that earlier. So yeah, we also don’t know the impact on patients who already had migraine, and often you see their migraine headaches worsen. And then the three variants of migraine :Ocular migraine where they get tunnel vision, hemiplegic migraine where they can become paralyzed and part of the body temporarily, and Vestibular migraine where they can have attacks of true rotational vertigo can also be more frequent or or they can be more symptomatic, or the problem more severe after their their COVID infection. And we don’t know what to do about that, other than to try to treat migraine as best we can. And fortunately, there are a lot of really great new tools that are available for migraine management that are really more the the domain of neurologist focused entirely on on migraine.
Dr. Danielle Tolman, PT
So one of the questions that we’ve had in our chat is can long term COVID mimic other Vestibular disorders such as 3PD, or vice versa? And I think you pretty much just answered that COVID can create a neurological condition like migraine and actually create the condition not not mimic it but actually created Vestibular dysfunction in itself.
Dr. P. Ashley Wackym, MD
And time is going to tell how that plays out. Unfortunately, we just don’t know yet.
Dr. Abbie Ross, PT, NCS
Well, with these patients that have neurological symptoms, what are we seeing in terms of intervention? So you mentioned maybe treating the headache, but are there other paths that we’re taking, in regard to intervention to address the symptoms outside of the typical, maybe shortness of breath, coughs or throat, the neurological symptoms that we’re seeing, including vestibular?
Dr. P. Ashley Wackym, MD
Yeah. So it’s interesting, most of the cells in our brain aren’t the nerves that provide function, it’s really the microglia that support those nerves that that are by far and away the most common cells that we have within our brain. And so there is a molecule called adenosine, this naturally occurring compound that helps nurture the nerves. And so some strategies are designed around ways to increase the adenosine levels to help the nerves heal. And so some simple things that increase adenosine levels are exercise, so at least 30 minutes of exercise a day. Caffeine can also upregulate adenosine. And then, while it’s not practical, on the long term, ketogenic diets, where people are pushed into ketosis will also upregulate adenosine. So those are those are some some strategies. You know, the obvious ones of Nutrition and Dietary Supplements, certainly could and should play a role. But we don’t know any good short term or long term studies of, of interventions to help resolve this more quickly.
And I’ve had one personal friend that had just severe cognitive dysfunction after she had COVID And it was early on in COVID. It was profound. She’d been talking and keeping her thoughts connected. She’s still impacted by it two years later.
Dr. Abbie Ross, PT, NCS
Wow. Now, you mentioned research in terms of intervention is still lacking what types of research out there you being a researcher and mentioned that earlier, what types of research has have been developed for post COVID dizziness in particular?
Dr. P. Ashley Wackym, MD 19:24
Well, you know, we don’t know enough about it to be able to do anything other than what we what we normally do in managing Vestibular disorder patients. You know, a related topic is what happens after COVID vaccination. And there are a small percentage of people who have endo-lymphatic hydrops type of symptoms after they’ve been vaccinated. And so, you know, that leads to questions about you know, if I had a bad reaction after the first one and had hearing and balance problems, after my first vaccine, should I get my second vaccine and you know with that, it’s also a question of which is worse the the hearing and balance disorders or COVID. And with a Delta variant, that was an easy answer, because it’d be better not to get the Delta variant. But now with Omicron, it’s probably better to get Omicron. And probably everybody should get that. And we can close this chapter and move on in our lives.
And so with some of my patients who have wrestled with that decision, you know, I’ve had that conversation with them. And then I’ve also talked with them about, you know, we can inject steroids into your middle ear, some time interval around when you get the vaccine, you know, but we don’t know, do we do it before and we do it the same day, do we do it a couple of days later. It’s really unclear. You know, what we should do, but what we have to do is just draw upon what we know from medicine and from Vestibular disorders that we’ve been treating for decades and decades, and try to extrapolate from that and decide how to best treat these patients.
Dr. Danielle Tolman, PT
So we opened the door to start talking about our COVID vaccination, and you know, what that looks like for this patient population and what we should take into consideration. First, let’s start with is there any known research or anything that you can contribute anecdotally, to what patients have been experiencing post vaccination, if anything?
Dr. P. Ashley Wackym, MD 21:33
Well, obviously, most people don’t experience much of anything except muscle pain. And there’s no good predictor of who’s going to have an inner ear response after a vaccine. I saw one of the questions pop up later about blood pressure issues and, and so there is an incidence of inflammation of the heart or myocarditis, especially in young men after vaccination. And, you know, one mechanism, how blood pressure could be impacted could be if their heart was impacted with inflammation. And having an echo study to look at their muscle function of the heart would be a logical step not to take there.
But you know, personally, anecdotally, I can also say, I was overjoyed when I was able to get my first vaccine and December 9, of 2020. And couldn’t couldn’t they actually called me the night before and asked if I wanted to get it. And they said, What’s your first appointment tomorrow, and I was there at eight o’clock and got it. And my second, happy to do that. And then I was a little bit nervous about the third one and ultimately decided to do that and had two Pfizer’s and I also had them give me a full better Moderna as my third booster shot, but I don’t know about the fourth shot and the fifth shot or any of that just yet, and I am a big vaccine person. We went to Africa in 2018. And they give you a list of some vaccines that they recommend, and some other ones that were kind of, we could do if you want. And one of them was polio. And there are only seven cases of polio the year before in the world. And I thought, well, I don’t want polio, I’m okay getting the vaccines. So the whole family got the polio vaccine. And it turns out from the Mayo Clinic study, there was a 42 times protective rate against COVID for people who had the polio vaccine. And so how did that work? I’m just happy I got the polio vaccine. And I’m shocked that through this whole thing, I’ve never gotten COVID. And I work with COVID patients almost every day.
And so I, you know, I don’t know why that is. And I’ve seen that with other families. You know, I’ve had one young man comes to mind, who worked in Manhattan, who came to New Jersey, with his parents to recover from COVID and he was coughing on them and throwing up on them and neither parent got it. And then you know, other people where one person gets it and just rips through the entire family. And then other people just don’t get so I just I don’t know what that is. The vaccine itself you know, it was very smart design, the Messenger RNA vaccines have been around since 2011. So it’s not, you know, brand new technology. And it turns out, the man that designed the the Messenger RNA sequence was my chief resident of medicine when I was a medical student at Vanderbilt. And so he’s an HIV researcher at the NIH. And the big problem with developing a vaccine for HIV is it changes a lot and so it’s this constant moving target and they can’t, they can’t, they just haven’t been able to solve that problem yet. And so he thought, well, you know, COVID Coronavirus, changes a lot and I think I’ll study Coronavirus and what changes in what doesn’t during mutations. So for 10 years, he was working on that problem to find out that spike protein, you know, there’s a whole part of it that doesn’t change and all the other parts that that do change and mutate. And so he designed that Messenger RNA vaccine around that core group of amino acids and making up that protein that tended not to change. And that’s how this all happened so quickly, they’d been working out for 10 years, but never knew that it would ever need to be applied to a disease process like this.
Dr. Abbie Ross, PT, NCS
Sure. Now, I do want to make it clear for our audience that this is a conversation if you are, you know, for vaccine, against vaccine, that’s a conversation to have with your health care provider. This is just a discussion on what we’ve seen happening with both the virus and the vaccination. And with that being said, Is there any research starting to look at post vaccination, neurological symptoms that you’re aware of?
Dr. P. Ashley Wackym, MD
Yeah, and one of the, and I guess I was just framing this as a person that, you know, I am very pro vaccine. But there are a lot of people that aren’t, and there are a lot of questions are out there. But it’s also the case that a lot of these side effects and complications of either COVID, or the vaccine, just aren’t being reported. And, and I guess this makes me a bad doctor, but of all these people I’ve seen, I’ve never reported. I don’t even know how to report it. I know there’s an agency, that we’re supposed to report this too, but I, I’ve never done it, I don’t know how to do it. So it’s probably under reported, and my patient population is is definitely biased, because all I see are patients with hearing and balance disorders and, and I get patients come from all over the place that have those disorders. So my population is definitely skewed to see more of those people than most. So I don’t think anybody really knows what the what the true rate of occurrence of these side effects from either the infection or the or the vaccine are. But it’s also the case where I’ve had two people one, that that lost their hearing and had vertigo, three days after vaccination, and another that after COVID infection, they lost hearing and had vertigo. And it turned out they both had tumors. And so it was just coincidence that they had these things. And so there’s some of that that’s out there. And there been studies looking at the rate of sudden hearing loss and sudden onset of vertigo. And there have been some reports that say that this is just no different than what would have happened otherwise. And this just was a coincidence that they happen to have had COVID. But going back to what I just commented about not reporting, these, you know, who knows what the real rate of occurrences and it’s probably a lot, it certainly is a lot higher than, than what is out there in the literature.
Dr. Abbie Ross, PT, NCS
Sure, and you have seen patients post vaccination with new onset Vestibular symptoms, can you talk a little bit about just generally speaking, the prognosis for addressing those Vestibular symptoms?
Dr. P. Ashley Wackym, MD
So the post vaccine ones are a lot different than loss because of COVID. And so again, they’re more endo-lymphatic hydrops type of pictures and, and in our ear, I often tell patients is not the brightest organ in our body and so it really doesn’t know how to bring that pressure down. And so it’ll stay up if you don’t do something to intervene, but it tends to eventually, you know, drift down over time with intervention. And so, you know, watching sodium intake, using a diuretic, either homeopathic or pharmacologic, plus or minus steroids are really the main tools that we have to help affect change. And so the prognosis for the for the post vaccine inflammation and exacerbation of symptoms, whether they had hydrops problems before they got flared up or new onset, is is relatively good in in the impact isn’t as severe as if the inner ear is directly involved by the the COVID virus infection. And so that also brings me back to you know, what’s worse the having COVID or having side effects from the vaccine and I would have to come down on a personal level that it’s, it’s worse to have COVID than it is to have the vaccine.
Dr. Danielle Tolman, PT
Yeah, it’s interesting. We had a poll question out to our viewers and about we had 21 responses. The question was if you are vaccinated, did you develop our experience and exacerbation of Vestibular symptoms and 29% that there said that their Vestibular systems were exacerbated, 67% did not develop new symptoms and only five experienced new onset but of course, you know, knowing our audience, this is a Vestibular conference. Our results might be a little bit skewed in that sense. But it’s interesting to see that there is been a little bit of exacerbation, but the majority of people didn’t see too much of an issue or exacerbation, which is really good. Is there any reports of anaphylaxis with a vaccination? Or is the incidence of issues with this vaccination similar to any other vaccination that you could get like a shingles vaccination or your flu shot?
Dr. P. Ashley Wackym, MD
Yeah. Well, shingles vaccine, especially shingrix, the newest one, which the CDC recommends anybody 50 older I get has an adjuvant in it that is designed to really produce a severe inflammatory response.
And most people, myself included, it’s a good idea to get that vaccine on a Friday so that you can spend the weekend having flu like symptoms and be ready to get back to work again on on Monday. And the other bad thing about that specific vaccine is the you have to have two doses. So you know, what’s coming on the second dose which, which, you know, for me, it was like, Oh, great. There we go again, but yeah. I’m sorry, I kind of forgot where I
Dr. Danielle Tolman, PT
We were just talking about can happen similar to any other vaccine?
Dr. P. Ashley Wackym, MD
Yeah, sure. It was so and so with that, yeah, there definitely been people who’ve lost consciousness or had severe allergic responses, the monitoring times, typically 15 minutes to 20 minutes after receiving it to make sure that you don’t. Some people have allergies to some of the components of the vaccine. And, and so, you know, it’s definitely not a good idea to receive the vaccine, if you are allergic to the other components of the vaccine. But all vaccines, you know, were imperfect, it’s always a trade off of, is it better to be vaccinated or better to, you know, have that disease that the vaccines designed to help prevent?
And then it’s also interesting, you know, there was a lot of talk early on about, you know, the vaccine isn’t doing anything, you know, people are getting infected with the, with the virus, even though they’ve been vaccinated. And, and, but that’s how vaccines work. So, you know, we have to get the virus in our body, which by definition, means we’re infected with it before our immune system, which has been enhanced by the the vaccine can do its job of counteracting or neutralizing that, that virus that enters our body. And that’s something that, you know, our media kind of fanned the flames a little bit, I think people panicked about the vaccine doesn’t do anything. But in fact, that’s, that’s how vaccines work. And so the fact that somebody gets infected, it’s okay to be infected if you are vaccinated, because you’re gonna have less symptoms and less severe response. In fact my son is 27. And he was skiing in Park City, Utah, when he got COVID. And, and they all just kept skiing. They didn’t stop they didn’t, you know, it was like not a not a big deal for them, which is, which is also common in younger people, but not so much for older people like me.
Dr. Abbie Ross, PT, NCS 33:29
Question for you, when it comes to post vaccination symptoms, is there a defined duration of time between receiving the vaccine and onset of symptoms that we can say, Oh, yes, this onset is due to the vaccine?
Dr. P. Ashley Wackym, MD 33:44
So, so two issues with that, too. So, you know, the, each vaccine, our immune system, each successive vaccine, our immune system has been exposed to the Messenger RNA, and then the, our body manufactures that core protein, the spike protein, and then our body has seen that protein before. And so there’s a different type of immune response after your second and third dose than after the first dose. And so with the second dose and third dose, typically, patients would have flare up of endo-lymphatic hydrops type symptoms, usually two to three days after vaccination. With the initial one, it was more like a week that the patients would present with those with those symptoms. But again, you know, there isn’t that much information out there. I guess the positive thing is most of the time, that endolymphatic hydrops can be managed medically, although there probably going to be some that will have, you know, persistent endolymphatic hydrops that isn’t very responsive, but I have not seen that yet.
Dr. Abbie Ross, PT, NCS 34:58
And then also, if we could go back to the virus itself, you had mentioned the different variants and perhaps, you know, maybe you do want to get this one, maybe you definitely don’t want to get this one. Can you talk a little bit about the different symptoms that we are seeing with each variant in particular, is there one that we see more neurological symptoms with versus another?
Dr. P. Ashley Wackym, MD
Well, the more aggressive virus that, you know, was what we saw worldwide initially, had far more significant symptoms and more neurologic involvement. With Omicron, most people don’t have that. Although the wife, the husband of the woman who’s the otolaryngology head nurse in our operating room, was 72, didn’t get vaccinated, and he died from Omicron just recently, and, and so it’s still a serious matter.
But one of the things that happens with with viruses in general, they tend to become less virulent, more or less damaging to the host, the human. And that’s also a viral strategy because viruses want to reproduce, they want to live and, and if they kill everybody, then they’re not going to be around very long, but they mutate and become kinder and gentler and, and people get less symptoms because of that. And so eventually, we should get to a point where it isn’t that bothersome. And the other thing about Coronavirus that really isn’t talked about, you know, every single cold season that we had, you know most are caused by Rhino viruses but at least two to three cycles of colds that would roll through the US every year were Coronavirus, and it’s just that this one that happened in 2019 was really bad one.
Dr. Danielle Tolman, PT 37:01
That’s a it’s a really good thought to have that a viruses don’t want to kill us all, which is good. I’m looking at some of these questions, which is actually a really good point from one person. They asked if you develop Vestibular neuritis from COVID, with no previous history of this tubular dysfunction, or disorders, are you at a higher risk for further Vestibular problems in the future? So this kind of goes into full with one of my questions about how we noticed any incidents have increased BPPV issues following people that have had COVID especially I think I’ve heard of people who’ve been intubated.
Dr. P. Ashley Wackym, MD
Yeah. So a couple of things to respond to that. So with these Vestibular neuritis or neuritis type of presentation patterns, you know, and also from that one patient with MRI findings showing inflammation of the vestibular nerve, those insulating cells would be damaged and the nerve doesn’t function as well. And you know, all wires need insulation to be able to transmit the electricity. And the same is true with our cranial nerves, including the Vestibular nerve to get those electrical impulses from the inner ear back to the brain. And so usually, from other types. So let’s go to what we know about vestibular neuronitis or vestibular neuritis. So most of the time, it’s a herpes family virus from reactivation of latent virus, and 45% of those patients will recover all their Vestibular function. There are still patients who don’t recover all of it. And, and it’s probably a little bit different because those virus would be living in the Vestibular nerve cells themselves. And when they get reactivated and cause the virus to reproduce and damage, the nerve is actually damaging the nerve and not the insulating cells directly. So with COVID, knowing that the receptors are on the insulating cells that take the virus in and those would be damaged, I would expect that most of those patients would recover if those Schwann cells can reproduce themselves, which they typically can do. So they should they should be able to have recovery of that. But again, you know, we don’t know, with COVID there’s a lot we didn’t know, medically and most of the patients were treated exactly the wrong way when COVID started. And so you know, we were all afraid to give steroids to patients with COVID because we were worried that it would let the virus go crazy and and then in reality, that’s the best thing to do because of there’s a delayed, what’s called a cytokine storm that happens as our body responds to the spike protein. And using the steroids helps minimize that inflammatory response that happens because of that cytokine storm so we learned that lesson. You know, they used to think we need to put them on ventilators right away. And that’s the exact opposite thing. And we thought it was direct involvement to the lungs themselves. But it was really more blood clots in the small vessels in the lungs that didn’t let the lungs do their job of exchanging the CO2 for oxygen and letting the oxygen get back into our system. So we’ve learned a lot. And things are quite different in terms of how patients are treated.
And I think that’ll have a positive impact on patients who had adverse reactions because of COVID infection, the impact of their hearing and balance function.
Dr. Danielle Tolman, PT
So that kind of piggybacks into a really specific and great question from the q&a. Somebody asked can HSV anti viral meds such as Valtrex help to manage and or prevent particular symptoms from worsening due to possible HSV reactivation?
Dr. P. Ashley Wackym, MD 40:59
Yeah, so, I always advise people to get the shingrix vaccine if they’ve had a sudden hearing loss or if they have a Vestibular neuritis or neuritis type of pattern. Is there evidence that that is going to help people down the road? You know, a second part of that question is how often does the virus get reactivated again and somebody who’s already had vestibular neuritis, and it’s pretty low percentage, it’s, you know, it’s on the order of 2% or so. But that’s an easy thing to do. Pro vaccine. I tell all my patients to do that. A lot of them don’t do it. But you know, I speak my mind. And my job is to gather information and interpret it and give recommendations and then patients will do what they feel is the right thing to do, which is which is totally totally normal. And good.
Dr. Abbie Ross, PT, NCS
This question is asking specifically about the antiviral meds though not necessarily vaccine.
Dr. P. Ashley Wackym, MD
Yeah, yeah. So there’s no evidence that Valtrex is helpful against COVID. But there are other antivirals that have been developed that are used. You know, the monoclonal antibodies are also used to help wipe out the viral infection to boost up the immune system for our own immune system can get activated. So there’s really no evidence of Valtrex would be helpful. There is evidence of drugs like Ivermectin, which for strange reason, I so I’ve been practicing over 30 years. I’ve never been told you can’t prescribe this or you can’t prescribe that. But for whatever reason, that was the case with Hydroxychloroquine and Ivermectin, and Ivermectin is a drug that’s been around for a long time. The man that discovered it received the Nobel Prize for that in 2015. And that’s what has really transformed India, everybody. When India COVID was hitting India, you know, it was going to be a population that was immense, with low likelihood of substantial vaccination across the country. And they rolled out low dose Ivermectin in India, and it stopped COVID In India, which is, which is interesting and also scary how all this has been managed in the US.
I have no direct experience with Ivermectin. I have a scientist in my department that was able to get Ivermectin and when he and his wife and newborn all got COVID. They started taking Ivermectin and it resolved quickly for them.
Dr. Abbie Ross, PT, NCS 43:46
What type of medication is Ivermectin?
Dr. P. Ashley Wackym, MD 43:50
It’s a drug that’s used largely as an anti parasitic medication. In the media they talked about it being horse dewormer, but it’s really used for people with specific tropical parasitic infections. But you know, again, I am not advocating Ivermectin, it most likely you couldn’t get it even if you if you wanted to. But it has been used across the world in different populations and has had a positive effect.
Dr. Abbie Ross, PT, NCS 44:25
Now moving on to another question from the audience. Does having a preexisting Vestibular disorder make one more susceptible to long COVID symptoms? Do we know?
Dr. P. Ashley Wackym, MD 44:37
So, another great question. So again, something that we touched on about a half hour ago, you know, our brain is really important for maximizing our function. And and both Dr. Ross and Dr. Coleman know this better than most but our brain with the Vestibular Rehabilitation Therapy is really the key component to how patients are able to improve their balance function. And it’s all about integration, you know of our inner ear and Brain Balance mechanism input, our vision, and our, our somatosensory or proprioceptive input that provides information to our brain about our body position. And so if our brain, because of long COVID, can’t do that job very well, it’s definitely going to exacerbate the balance problems that people with pre existing balance problems had. How that’s going to resolve and what kind of timeline you know, I think all those things are going to be what we observe over time.
Dr. Danielle Tolman, PT 45:43
So there’s no, there’s no specific answer, right? It’s gonna be different from person to person, what they have going on in their health history and comorbidities, how long they might experience symptoms, if they’re more susceptible to experience certain types of symptoms. It sounds like it’s a very big variable.
Dr. P. Ashley Wackym, MD
Yep. And so let’s say somebody had a pre existing vestibular problem, they had long COVID, their symptoms are far worse, re entering vestibular rehabilitation therapy, you know, it was probably appropriate for them. Being well rested. You know, melatonin, for example, so that people are better rested, could be a strategy, knowing that your balance is going to get worse as you get more fatigued because your brain is used up the available processing power that it has every day is something that should be anticipated, and not get upset or worried or frightened. Because it does your balance does get worse by the end of the day. It’s really about understanding the underlying processes and what to expect. And it isn’t that your underlying Vestibular disorder got worse by five o’clock. It’s just that your brain can’t process as effectively. And you will get worse in terms of your hearing and balance function.
Dr. Danielle Tolman, PT
Oh, that brain fog and cognitive function as well.
Dr. P. Ashley Wackym, MD 47:06
Yeah, that’s something I’ve been very interested in, especially with third window disorders and how that happens. And we found the psychology studies looking at that. And we’ve now developed a superior semicircular canal dehiscence animal model with a gerbil. And gerbils are really smart rodents. And you can train them with behavioral tasks to make decisions. And it’s interesting when they have another good thing about this animal model, the hole that you create in the Superior canal regrows over time. And that’s a function of how big the hole is. And so you can monitor the VEMPS and their auditory function, and also their behavior. And watch it recover as the hole closes again. And so once this model is established, what we’re hoping to be able to do is to better understand what part of the brain is really dysfunctional. And that’s actually something nobody knows. Is that the cerebellum? Is the hippocampus?. Is it the striatum or caudae equivalent in humans? We don’t know. And so the same issues are going to be at play with COVID. But we don’t we don’t know what areas are involved with long COVID. And, because of that, we don’t know how that’s impacting the balance system, except for what we talked about with the brain not being able to process the input very well.
Dr. Abbie Ross, PT, NCS 48:42
So the bottom line is, as always, more research is warranted. Let’s move on to another question from the audience. Suspected COVID infection not vaccinated How long after infection would a COVID antibody test show antibodies?
Dr. P. Ashley Wackym, MD
Yeah, another good question. So we actually just had our first face to face medical meeting in San Diego a couple of weeks ago. And at the registration desk, they had just stacks of COVID antigen tests to be able to test yourself whenever you wanted to be tested. And it turned out there were 400 people there. About 50 people got the flu, myself included, and it was only a 24 hour bug and everybody initially thought oh, it’s food poisoning. But all of us, you know, have the antigen test. And also the the PCR based test. So the PCR test is it’s designed to so Coronavirus is an RNA virus and which is different than a DNA virus. And so to do PCR you have to do what’s called reverse transcription to convert RNA into DNA and then they can do the PCR to amplify up the message to be able to see Is it Is it there or not. So as soon as the virus is there, you can do a PCR test and know that
It’s that it’s positive. The antigen test is, is also looking at infection, but from a different perspective. So it’s really the proteins of the virus that there are antibodies in these in these antigen tests that will bind to that. And so that has to be in your system before having that test. And so they have a couple of different versions one is saliva based, another is blood based serum in the blood to be able to detect the presence of the of the protein or antigen that’s there. So the PCR one right away, but it also can stay positive for up to 12 weeks afterward. And so we deal with this now in the operating room, because if somebody had COVID in a month ago, asymptomatic, get the COVID test, it’s positive, do you cancel the surgery? Or do you, you know, move over surgery and, and PCR tests can also be false positives, and so you may never really have COVID, but the test comes back positive, because it’s so sensitive. So the testing is kind of an issue. And I don’t really understand, you know, this big push for testing right now. Because either you’re sick or not sick. And if you’re not sick, but you’re positive, you know, what does that mean? And what do you do about it?
In California, now, they let infected nurses with COVID work right now in the hospital, because it’s so short staffed, and they try to limit it to COVID patients, the return to work is kind of arbitrary. In the beginning was 14 days now it’s five days and, and, and here, for us in the hospital, or the clinic, it’s five days for us. But the medical students, it’s 10 days, it’s, you know, who knows what the right answer?
Dr. Danielle Tolman, PT
We’re constantly changing guidelines based on the changing research, I suppose. Where is the research going? Where are some of the things that are being looked into a study now where we’re starting to get some new information about in regards to research?
Dr. P. Ashley Wackym, MD 52:12
Yeah, I mean, largely focused on infection issues and prevention strategies and in and also outcomes, you know, long COVID being the biggest problem that we have. And so, as I mentioned earlier, most academic medical centers have long COVID clinics so that they can follow patients better understand what they experience and what those timelines look like, and what interventions they can expect to develop. There are also disparities and different groups that are impacted by COVID. Some, some people probably for genetic reasons are more susceptible to complications from COVID, and others aren’t. And we don’t know why that is or what the genetic reasons for that are. But those are areas of active research too.
Dr. Abbie Ross, PT, NCS 53:06
Just anecdotally, I have a question for you in terms of, well, I’m not sure how big or what your Census is, in terms of how many patients you see because of all the other things you’ve got going on. But what percentage of your caseload would you say are related to COVID 19 virus or vaccination?
Dr. P. Ashley Wackym, MD
So that has varied over the last two years. And so with the more severe infections with a Delta variant, it was a lot more common or, you know, big clusters of patients that would come through with inner ear involvement from the virus itself.
Most what else is gonna say about that? You know, it’s pretty infrequent from COVID infections. Now it’s also infrequent with current COVID infections and people get long COVID Or have, you know, the cognitive dysfunction. We know, from smell and taste function and recovery, that most of the COVID patients that lost their smell and taste, recover that function to varying degrees. That also means that those nerves are having some plasticity and recovery. And other types of viral infections that cause loss of smell and taste often don’t result in recovery. So there’s something different about the COVID virus that is, is having a different impact on on patients, but fortunately, as this viruses mutated, it’s become much much less common to see Coronavirus related loss of hearing and balance function.
Dr. Abbie Ross, PT, NCS 54:47
And was that a similar response when you know there were waves of people getting the vaccine you saw some of those patients and then that’s kind of tapered down?.
Dr. P. Ashley Wackym, MD
That’s different. It was when I was pausing. It was kind of trying to formulate what was it gonna say about about that. So thanks for bringing that up. And obviously, I didn’t speak because I think that’s kind of difficult to answer. I think that’s been more steady. It isn’t a big percentage of the people that get vaccinated, but it’s been pretty steady over time. And it seems like every week or every other week, there’s a new patient that that has had some adverse reaction to the to the vaccine that impacted their balance function. But again, way milder than if it involves the antigen itself.
Dr. Danielle Tolman, PT
I was just gonna say that when, when Abby and I have spoken on this topic, when her and I were talking back and forth on our podcast, you know, when this first started popping up, but one thing we had mentioned that, you know, it seems like people do have reactions to vaccinations, like you’ve talked about before, since similar to this shingles vaccination. But this is the first time in a long time that everybody is getting vaccinated all around the same time. If we’re seeing, you know, increase incidences of these type of symptoms popping up just because everybody is getting vaccinated, it’s not just, you know, some people here and there over a period of all year round, it’s as soon as we can get this vaccination, we want to get this vaccination. And this is why we’re starting to see this uptick in symptoms, would you say that that could be a good possibility?
Dr. P. Ashley Wackym, MD
That’s a great point. And another related point I’ve never seen in a child. So I’ve not seen inner ear involvement in a child with vaccine receiving vaccine. And most of the time, it’s more I’ve seen it more common in women than men and also women in their 40s is kind of the peak group of people that have had adverse reaction. So you know, what is it that’s, that’s different, you know, between age and gender. You know, nobody knows. The endolymphatic sack is something’s very interesting to me. And I spent the winter of 1985 in Stockholm, Sweden, doing electron microscopy studies of the human Endolymphatic SAC, with Dan Beckershoback, and Helga Rasca Anderson. So I’ve been a fan of understanding the function with the endolymphatic sac for a while.
Dr. Abbie Ross, PT, NCS 57:19
How about pediatrics post virus.
Dr. P. Ashley Wackym, MD 57:24
So most kids, so I’ve never seen a child have inner ear involvement with COVID infection. Most children really don’t have adverse reactions to COVID infection or the vaccine, except for young men with myocarditis is the only thing that’s emerging and in the literature, and I was, you know, my son got the j&j vaccine, which of the three is the is the least protective. And so he was able to get a booster dose and he picked the Pfizer vaccine, only because the Moderna one seems to have more of, the Moderna was the most robust response vaccine. That’s why I picked it for my booster shot. And I also I’m 64, I wanted the best protection and so I told the vaccine people here at the medical center that I want a full dose, I don’t want a half dose and so I took full dose, but with my son, you know, I cautioned him, you know, get the Pfizer don’t get the Moderna one just because of the myocarditis issue.
And it’s very infrequent that children even hospitalized it’s even more infrequent that they have serious problems from COVID infection. And it’s usually kids that are obese and have other medical problems just like it is with adults.
Dr. Abbie Ross, PT, NCS 58:59
Could it be in the female population that you were talking about? Could it be hormone related?
Dr. P. Ashley Wackym, MD 59:07
I think that’s that’s a reasonable, reasonable question. But there’s really no evidence about that. And, you know, I, I guess another related issue is, you know, vestibular disorders are more common in women than they are in men. Endo-lymphatic hydrops is also more common in women than than men. You know, why is that?
Dr. Danielle Tolman, PT 59:31
Still a lot to be determined in research. But it sounds like overall from today, there are multiple ways that COVID can affect our Vestibular system, whether it affects the apparatus itself, the nerves that lead up to it or the brain. There’s a lot of research that’s emerging, and we’re getting a better picture as what this is going to look like, what recovery is like, what vaccinations look like and how we can expect to feel after them. I think you’ve answered a ton of really great questions today. We really appreciate your expertise and your time on this subject.
Dr. P. Ashley Wackym, MD
Well, thanks so much. You guys asked great questions as to the the audience. So thanks for the opportunity and continued success with your meeting.
Dr. Abbie Ross, PT, NCS
Thank you so much, Dr. Wackym for being here. Thank you to our attendees for joining us. And we are now going to pass it off to the patient panel, hosted by Laura kalla. Let’s bring her on up here.
Dr. Danielle Tolman, PT 1:00:29
See, there we go. Hi, Laura, how’s it going?
Laura Cala 1:00:36
Hi, how are you?
Dr. Danielle Tolman, PT 1:00:37
Good. What time is it there again? Can you remind me?
Laura Cala 1:00:38
It’s two o’clock in the morning.
Dr. Danielle Tolman, PT 1:00:43
You are a Vestibular superstar, and probably the best person for leading all this. So, we’re going to pass the torch off to you. I hope you get a little bit more sleep throughout the rest of the week. But good luck with everything today and happy day two of our Live Rebalanced Live.
Laura Cala 1:00:59
Laura Cala 1:01:07
Hi, everyone, let’s kick off day two of our patient panel. For those that don’t know, my name is Laura Cala. I have Vestibular migraine, and I’m based over in Australia. Before we kick off our questions to our patient panel, I’ll get Katie and Crystal to both introduce themselves. If you do have questions for them, please post them in the Q&A. And I’ll be monitoring that and the chat throughout the next hour. So, Katie, would you like to tell everyone a little bit about yourself?
Katie Stevens 1:01:35
Sure. I am located in Cedar Rapids, Iowa. I was diagnosed with PPPD back in March of 2020. So, right when COVID kind of shut everything down. I got my diagnosis the very last day that the clinic was open to the public. So, I kind of started navigating that solo because everything was not available. And then I was diagnosed with COVID Back in March of 2021. I was hospitalized in the ICU for 10 days. So, it was a near death experience. And I actually was pregnant at the time. 28 weeks. So, trying to kind of figure out those things together has been a challenge. But we’re powering through, so…
Wonderful. Crystal, could you tell us a little bit about yourself?
Crystal Propes 1:02:28
Hi, yes. Sorry about the black bars. Couldn’t get it to work on my computer so I’m phoning it up. I am based in Greenville area of South Carolina in the United States. Um, I got in a car wreck when I was 20 years old. And we flipped end over, and ever since I’ve had BPPV on the right side. And it flares up and down. I’ve had episodes for the last 11 years. And I was diagnosed with COVID in December of 2020. And I did not have it. I’m so sorry for your experience, Katie. It was pretty mild for me. Um, but we, I dealt with the taste and smell loss. It was excessive and long lasting. And so that’s pretty much my stuff.
Laura Cala 1:03:29
No worries. All right, let’s kick off about what our audience want to hear about COVID. Katie, can I go across to you? I know you briefly mentioned it before. What were your initial symptoms? And how long did they last with your COVID experience?
Katie Stevens 1:03:45
So, we actually never got tested when we first were ill. My mother-in-law got tested; she tested positive. So, we knew that that’s what we had. My husband works with her. He runs a chiropractic clinic so they’re together every day. So, we thought, oh, that’s what we have. So, we stayed home. We quarantined. We had the fever, the body aches. We also had, at that point, a two-year-old to take care of, so we kind of tag-teamed that. And then as the symptoms went on, I lost my taste. I lost my smell. And then being pregnant, I also – this sounds so silly – but I couldn’t breathe. And I knew that I couldn’t, but it took someone else – my mom, who was bringing my daughter back home one night. And she said, “You are a mess.” And I’ve heard from other doctors that when you’re really sick like that, you don’t realize how sick you are. So, it took an outside party, thanks to my mom. So, she took me to the doctor and then they admitted me right away into ICU for – I was in ICU for a week, and then the post-recovery, I think it was pathology, for another three or four days. So, it just was extreme illness. I have never been so sick and that would have been the Delta at that point.
My mother-in-law actually was hospitalized the same day that I was. She ended up passing away a month later. So, we kind of had those struggles together. So, I know what could have happened to me, being pregnant. I know it was handled a little differently. But I was able to come home. And then recovery did take a couple months before I really got my strength back. But the recovery was really focused on being able to be strong enough to give birth. So, that was the difference in recovery. It was really healing my lungs to be able to give birth, but it did take a few months, and then now we’re just still in postpartum. So, it’s all difficult: knowing, you know, is it COVID? Is it postpartum? I’m not really sure. But the symptoms were very strong at the beginning.
Laura Cala 1:05:56
And Crystal, how do you compare in regard to – you did mention it very briefly before – but what were your initial symptoms? And how long did they last? COVID specific.
Crystal Propes 1:06:07
Okay, so I, I was also, I was postpartum when I got COVID; my son was 11 weeks old. And my daughter – I have three – my daughter brought it home from school, and she didn’t have a single a single symptom. We didn’t know that she had COVID. We had gotten notified that her aide was sick with COVID like, two days later, or maybe three days after Izzy would have been exposed. And no one was sick yet. But then the next morning, my husband woke up with a fever. And just, like, really flu-like symptoms, and I was, like, “Okay, you got to go get tested.” And I had had a, like, really nasty sinus headache the night before, but I am – I have all kinds of sinus problems, so I didn’t think anything about it. And so, he got tested, and his was positive. And I was like, well, is that what these sinus headaches are? So, we all went Monday morning, because that was a Sunday. So, he went, like, to an urgent care and got an antigen – like, the rapid test. We all went Monday morning, and I made them test my daughter, because she was the exposure, and then me and my husband. I made him get a PCR test too, and they all came back positive. And Izzy and my other two my sons – even the 11-week-old baby – they never developed a single symptom the entire time. But my husband had flu-like symptoms, I would say, for probably about a week. The worst was, like, the first two days of it. And then, I was three days in when I lost my taste and smell, and it was, like, all encompassing. Like I couldn’t smell bleach. I couldn’t smell, like, concentrated peppermint oil. Like, I couldn’t smell anything, and the taste was fully gone. And that was probably, honestly, my worst symptom. So, and then sinus headaches, and I was like, fatigued for, like, a day and, like, maybe slightly achy for, like, a day, but it was very mild, comparatively. Um, and I was, like, in the postpartum period. So, I in my, obviously, 11-week-olds don’t really sleep. So, I think, like, it was hard for me to determine like, what is COVID? and what is, “I have a newborn.” But the taste and smell thing was, like, definitely the biggest symptom for me.
Laura Cala 1:08:36
Yeah, well, okay. Now, our next question goes into having, how did COVID affect your ongoing Vestibular issues? Now being over in Australia, we haven’t really seen COVID anything like what you both have? Being in WA in particular, it’s sort of we’re only getting into the few 100 cases now. So, I can only imagine what having COVID with Vestibular would be like. So, Katie, can you share your experiences with how it’s affected your ongoing Vestibular issues?
Katie Stevens 1:09:10
Absolutely. So, for me for a long time, I was doing exercises where I would go into a store that had fluorescent lighting and shiny floors and tall rows that I would practice walking down to kind of retrain my brain that that’s a safe place, that I’m okay there. The downfall of being so sick for so long is, I was not able to go anywhere. So, my brain kind of went backwards. And I had to start from the beginning. So, where I was before I was sick, I could just go anywhere, and I was to the point where I could go in any store. It didn’t matter what the lights were like. I didn’t have to prepare before; I could just go in. I had to start that all over again. Because I had been in a room for so long just by myself without any sort of physical activity. And then the physical training – and when I say training, I literally mean walking two laps around my kitchen. That was enough for me for one day of activity. So then building from there to being able to, now, I still am struggling a little bit with going into bigger stores, especially if I am by myself. But that was really the most difficult thing, was just being confined into my safe place of my home for so long, and then having to learn how to live normal in stores and those kinds of things, social situations again.
Laura Cala 1:10:44
No, absolutely. How about you, Crystal? What have you found your ongoing effect of COVID and your ongoing Vestibular issues?
Crystal Propes 1:10:54
This is hilarious that I didn’t mention this, but I actually got COVID a second time recently. I, like, I don’t know why – like, we were so focused on our first time – I don’t know why that didn’t come up. The first time I had COVID. It was I guess it would have been when Alpha was starting to, like, take over. And it didn’t, surprisingly, really affect my BPPV, which was shocking to me. Because typically, when I get sinus, anything, it sets it off really bad. Like, I won’t be able to sleep on my right side. I’ll have constant headaches from the, like, my brain, like, wanting to spin. And I was shocked that COVID didn’t cause it. But this last time, we just got over it, like, two weeks ago. And that time it was a little more upper respiratory involvement, like, my nose was a little more congested; my sinus headaches lasted, like, a couple more days. It did affect my BPPV. It, I never got, like, like when it’s at its worst, if I, if I tilt my head to the right, the world’s spinning, but this time, it never got that bad. It would just be, like, if I would lay down on that side. Like, it was like that whole, like, “you’re on a boat” feeling type situation, and it just really seems to, like, inflame that inner ear area, and just those crystals being loose were so much looser. And, and it took a couple days to tamper back down to, like, normal, where it will literally only trigger it if you try to, like, lay me back on a pillow and tilt my head back, you know, to purposely trigger it. Um, but it didn’t last, like, I was afraid it would stick around, and it didn’t stick around, thankfully.
Laura Cala 1:12:41
Wow. All right. So, Long-haul COVID is becoming recognized as a chronic disorder. And yet Vestibular disorders remain relatively unknown. So, Katie, do you find that people are more sympathetic to you, when you say that you have Long-haul COVID, then when you’ve explained that you have a Vestibular disorder?
Katie Stevens 1:13:02
100%. I think it’s, I don’t know, if it’s because I’m more familiar with COVID or because that’s all they’re hearing about now, and the news and those kinds of things. But they’re definitely more sympathetic to COVID. I would do work full time. So, COVID was actually, the whole COVID thing was kind of a blessing for me from the beginning, because we were forced to work from home. So, I was able to continue working and functioning that way. So, now that we have to go back to the office, I actually put in a request to work from home part time, because of COVID. Even though, really, for my Vestibular diagnosis, it easier for me to work from home. But because of COVID, it was more, they were very more, like, much more sympathetic and understanding. And they know that I went through a lot. So, they’re like, “Oh, absolutely. Whatever you need to do.” Well, really, I had my Vestibular diagnosis much earlier than COVID. But I don’t think that they all understand all of that or think that it’s justified maybe?
Laura Cala 1:14:06
No, absolutely. And we spoke about that last night on the patient panel as well, about how COVID and the pandemic has made working from home much more – I went from working in a corporate office and, being able to work at home at a different pace, it has, it’s changed my whole world. I don’t know how else to say that. Um, Crystal, what about yourself? What do you think about that? Have people been more sympathetic about your COVID – the Long-haul COVID – than when you’ve explained the Vestibular disorder?
Crystal Propes 1:14:40
Oh, for sure, I tell people what BPPV is, and they like just, like, blank face, like they have no idea what I’m talking about. They don’t realize how debilitating it can be. Like, when I get in an episode. All night, like, all night. Um, and I can’t sleep because I can’t lay down, and my body is so tense from the spinning, and I have horrible headaches. It is awful, way worse than my COVID experience was. And people just don’t, like, they don’t, they just look at me, like, they don’t even understand. But with COVID, you know, my main Long-haul symptom was that I legitimately, like, had distorted taste and smell for a full year. Actually, getting Omicron is what fixed it, of all really strange things. But I would tell them, like, oh, yeah, I haven’t tasted or smelled anything correctly in, like, six months, and people are way more, “That must be so terrible.” And I mean, it was awful. But it was not nearly as awful as my BPPV was. So, it’s definitely way more recognized than then the B[PPV]. And I feel like it’s hard to, like, both of those things are kind of hard to sympathize with. Like, if you’ve never lost your taste and smell, then, like, you really don’t know what it’s like. And if you’ve never had really bad vertigo, then you really don’t know what that’s like. And, so, it is weird to see the difference in people’s reactions.
Laura Cala 1:16:00
Absolutely. And I, I even had a conversation actually earlier today, my time, around explaining the conference and explaining the symptoms that I get. And the common theme was, “Oh, my goodness, I never, I never knew you had that.” And I mean, we’ve all gone into detail about the disequilibrium that we feel, like, you know, just walking 10 meters.
I’m sorry, I can’t hear.
Laura Cala 1:16:29
We can hear you. Are you there? Crystal? Crystal, can you hear me? Can you hear me okay, Katie?
Yeah, I can hear you.
Laura Cala 1:16:49
All right. Okay. I guess I found that it’s that explanation around what we experience. And it’s that lack of, I guess, understanding and education from an outsider’s point of view. COVID is something that everyone’s talking about every single day. Yeah. But how amazing would it be if we could sort of freely talk about Vestibular conditions, with people actually understanding?
Katie Stevens 1:17:25
Right, and being as sympathetic to that as they are with COVID.
Laura Cala 1:17:30
Oh, that’s absolutely.
I think that’s what is a little frustrating because it’s debilitating every day. With COVID, I mean, I went through a very severe COVID experience, I understand that. And in the long run, it was temporary, compared to, you know, PPPD. Now, it’s been two years officially, where it’s been two and a half years, unofficially. So, the diagnosis for that took so much longer than where you can just take a COVID test, and you know right away: yes or no.
Laura Cala 1:18:03
Yeah. Wouldn’t that be, wouldn’t that be something that was very beginning of our journeys, if we, we took a test and we got a diagnosis. But that’s just not the case. Right. So, let’s move on to treatment and coping techniques, which we briefly discussed in regard to your journey and going through, but has your treatment and all your coping tools for dealing with Long-haul COVID symptoms differed from what you were previously doing for your Vestibular condition? And I know this is something that we so often talk about, and we did talk about yesterday on the patient panel, because our vestibular journeys teach us so much in regard to being able to cope and being able to pace. What was your treatment and your coping tools like?
Katie Stevens 1:18:51
So, I was doing therapy. I had a therapist I was going to at the beginning of my PPPD diagnosis, it would be every week. Since COVID, and everything went to Zoom, it just wasn’t as effective on Zoom, because you can really pretend more, and they can’t, it’s harder to feel what a person is really talking about or whatever. So, since I’ve now gone back, we were starting to do what’s called art therapy, where it’s not art like drawing, but art like replacing something that happened negatively with something that it still happened, but it’s putting more positive feeling to it. So, we’ve really been doing a little bit more of that so that I don’t have the negative feelings as often because my symptoms are really triggered with stress and exhaustion, which exhaustion is coming naturally. I have a seven-month-old now.
The stress of trying to heal. Start parenthood again. All of that. And my mother-in-law, with her passing away, we had a lot of, that was just a lot of triggers that were just, we were trying to work through. So that’s really been my big way of processing is with the art therapy. Also with smell therapy, I did lose my taste and smell. I notice still, as the days go on, I my smell is lessened. So, I do a lot with essential oils. But those two and practicing going into stores again. Those are the three things I’ve been doing.
Laura Cala 1:20:37
Absolutely. And I am, I know exactly what you mean about walking into a shopping center and sort of feeling, like, it is, I don’t know how to explain it. The words for it. It’s sort of like your brain explodes.
Katie Stevens 1:20:53
And I get, I call them trampoline legs, where I feel like I’m walking on a trampoline. And then I, it’s like, you walk in, and it just, your brain does. It just gets overwhelmed. And then my legs start to do the trampoline. I’m like, “No, like, you can do this.” You know? So yeah, just practicing. Like, it’s okay. I’m safe. All of that.
Laura Cala 1:21:14
Oh, absolutely. And I think so I went through something similar. It was called Cognitive Behavioral Therapy, which I briefly spoke at yesterday, but very similar to yours, where you separate each of those things. So, you know, it’s like you said, it’s knowing that it’s okay, you’ve gone through it. And you can keep moving forward without thinking, “Hey, I’m going to fall over,” or, “Hey, I’m going to pass out or not know what to do.” So, no, that’s very interesting. Crystal, welcome back.
Sorry, I don’t know what happened.
Laura Cala 1:21:51
No, no, you’re okay. Just talking about treatment and coping tools. So how did your treatment and coping tools differ for dealing with your Long-haul COVID symptoms? Were they similar? Or were they different to how you’ve previously dealt with your Vestibular condition?
Crystal Propes 1:22:11
I’m really, like, typically, if I have, like, an episode, I’ll, like, go to the doctor and have them, like, clean out my ears and stuff. Because it seems to be really triggered by, like, if I have, like, a lot of wax buildup in my ears, or it may, like, it’s sometimes the first indicator that I have a sinus infection. So, like, that’s how typically I, like, treat it. I know that there’s the Epley maneuver, and I am still too afraid to do it, because it triggers the vertigo, and I’m emetophobic. And I don’t want it to make me nauseous. So, I have yet to try that.
So, avoidance is a little bit of my, how I deal with my Vestibular disorder too. And obviously, like, if it was worse and less positional, I wouldn’t be able to do that. But it’s so positional that I kind of can just, like, avoid making those head movements and stuff like that. With my taste and smell issues, it was, I mean, I spoke to my doctor about it, but it’s so new that they just, like, really don’t know what to do. I did try, like, smelling, like, some essential oils and stuff. And it was good for when it was lessened, like, my taste and smell was just muted. Like, it went from where it was, like, totally gone, to for about probably, I would say, about two weeks, and then after that it was muted for a while, and then all of a sudden, it was distorted.
It was like, like, whatever got damaged couldn’t figure out what stuff was supposed to smell and taste like. Like, I’ll never forget, I was eating egg salad. And I thought that my mayonnaise was bad. Um, and it wasn’t, I mean, it was fine. It was that my taste and smell was distorted. Like, just the way onions smelled really weird and tasted awful, when I typically like them. Anything with, like, an artificial sweetener was really bad. And so, I like again, like, avoidance, would not like eat a lot of things that I used to love because it would just not taste like it was supposed to. But it was, like, my doctors when I come in and I have BPPV, they, like, are pretty good at, like, figuring out how to combat it. Whereas with the COVID Long-haul issues, they weren’t so sure what to do. They just didn’t really know.
Laura Cala 1:24:27
Okay, we’ve got a question that’s come in for you, Crystal, around: do you get a lot of popping and crackling in your ear with your BPPV?
Crystal Propes 1:24:37
I do. I have a lot of popping and crackling in my ears. A lot. I often have a lot of middle and inner ear issues in general.
Laura Cala 1:24:50
Yeah, that’s, it’s super interesting. Um, there’s another question that’s come in around: can we explain why our legs do that so quickly in stores? And Melissa said for me my severe photophobia triggers the VM from the fluorescent lights. But how, why to the legs? I can’t obviously answer that from a medical point of view. But I know that I, that was something I experienced really badly at the beginning. And I know, I can see Katie nodding along as well. I actually got to the point at the beginning when I was still finding a diagnosis where I actually just avoided it. And I know that we’ve just talked about therapy and getting past that. And I just obviously want everyone to understand that, you know, it’s sort of where we’re along in our journeys. And I remember being terrified, walking to the end of the driveway, it was terrifying. But those fluorescent lights were something else. I was actually at a stadium over in the Gold Coast in Australia. And it was at a competition, and the lights and the sound in there was so crippling that I almost, like, it felt like I lost all my sensations. So, I’m sure Cynthia will post an article perhaps explaining that. Katie, did you want to comment on that as well? Because I can see you nodding along with those fluorescent lights.
Katie Stevens 1:26:16
Yeah, they, it was one of those, I avoided them as well. And it was, when I went, I was going to VRT, and she said, “You have to go in, even if your first day, you walk in the door, and then you turn around and leave. The next time you go, maybe you walk a little further, and then you leave.” And it honestly took a really long time for me to feel comfortable going by myself. And I still to this day, I have a three-year-old and then a seven-month-old. I don’t know is though I’ve ever gone alone with them to the store. For that reason. I just don’t. Can I do it? Yes. But I get in my head about it. And I just I don’t think I’ve done it. So, we’re getting there, baby steps. But yeah, I don’t know. I don’t know why it happens. But it’s frustrating.
Laura Cala 1:27:09
Yeah, it’s, it’s interesting. And it’s really a part of that journey. Cynthia has posted an article on the chat around photophobia and light sensitivity, which I’m sure will be absolutely fabulous. Now you’ve sort of touched on it as well. And we will go into it in a further question. But what was your anxiety like with COVID versus, COVID Long-haul versus your Vestibular it was something we talked about yesterday and knowing how to cope with that. And I know we talked about the coping and the treatment, the treatment tools, but how do you cope with the anxiety in terms of those fears around being able to move and? And do you every day? And who is it that you draw on for support? So obviously, you know, for me, it’s, it’s my partner and being able to honestly say, “I need a minute,” or, “This is, you know, you go ahead, I’m just gonna take a moment, and I’m just gonna reset,” and I’m gonna keep going. Katie, what are your experiences there?
Katie Stevens 1:28:08
Um, I have had to, in the past, leave a few stores, and I leave my husband in charge with our daughter, I would say, “You know, I have to go, I have to get out of here.” The second I get to fresh air, it tends to go away. So sometimes it’s just getting fresh air even if it’s, I live in the Midwest, United States. It’s cold here. So, I don’t care how cold it is. Sometimes the fresh air, the cold just helps calm my brain; it says, just, “You’re fine. You’re good. Just take a minute.” I’m big into lavender essential oil therapy. And I have a really good group of friends. So, they all understand that sometimes we might make plans, and five minutes before, I might not be able to go, and there’s no hard feelings. There’s no judgment. It takes away the pressure to perform. And that’s what I need. I need to have no pressure.
Laura Cala 1:29:07
Yeah, no, wonderful answer. How about yourself, Crystal?
Crystal Propes 1:29:11
I have OCD. So, like, my anxiety is awful no matter what I’m going through. Um, but I would say that, sorry, I got so into listening to her answer that I totally forgot mine. Um, anyway, so coping with BPPV is kind of rough. Like, I have three little kids. So, when I haven’t slept all night, it’s hard to, like, get down on the floor and play with them. When the room spins, and I can’t, like, because I want to lift my son up and tilt my head back. I can’t do that all the time. And I get really scared that, like, what if it’s just spinning, and I drop him, or I fall or something like that.
And, so, that gives me like, like, severe anxiety. And then there’s the whole emetophobia aspect because, you know, nausea goes hand in hand with Vestibular disorders. Um, so that is difficult for me. So a lot of times, like, I just really need to relax. Thankfully, my husband, he’s my biggest support, he understands, which a lot of people don’t, and he will take the kids, and I just really need to relax. Like, I’ll go sit down and take a bath, like, fully relax, and then obviously I rely – because mine’s so dependent upon my sinuses – heavily on, like, I’ll take, like, Flonase or some other medication or, you know, clean out my ears. All of the physical things also, like, lessen my anxiety when it comes to the BPPV when it’s acting up. I mean, and the same thing with Long-haul COVID, when I had like, I always resort back to the same coping issue. So, I guess, like, it helped that I was used to having that kind of problem anyways, having BPPV and my OCD. So, like, yeah, if I didn’t have a good support system with my husband and my mom and my best friend, it would be a lot harder.
Laura Cala 1:31:10
No, completely understandable now, we’ve had a question in from the audience. And I’ll let you jump in if you feel comfortable. It’s Scott: “Would Katie or Crystal be willing to share if they are taking any medications for their Vestibular issues?”
Katie Stevens 1:31:25
So, I was actually going to just add that I do take Effexor, I was on 75 milligrams. And then when because I was pregnant when I had COVID, I had to drop down to half of that due to, I was in my third trimester. So, after – and I am breastfeeding – so after I gave birth, I realized I really needed to increase it again. So, I did go back up a little higher. But I do take Effexor, and it has made, it makes a world of a difference.
Laura Cala 1:31:58
Yeah, I think about that, too. Yeah, no, Crystal, you go.
Crystal Propes 1:32:02
Oh, I was just gonna say, a lot of the medicines that treat vertigo are antihistamines, and those aren’t, I’m still breastfeeding. And you can’t take those while you’re breastfeeding. So, like I have meclizine, like, in the cabinet in case, like, I ever gotten to a point where, like, I cannot handle the vertigo. It’s never gotten that bad before. Like I said, it’s really positional, because I could take a dose or two and my supply would probably be fine. But I also have Zofran on hand. Like if I ever like does start to mess with my stomach. And, like, I said, I take, I’m on Flonase and Singulair, and, I will say, Singulair is the best thing that’s ever happened to me. I took it for a long time, before I had kids to deal with because I don’t, the antihistamines don’t really work great for me. Zyrtec. Claritin. And they never really did anything. And I think because most of my sinus issues and my – I have really bad allergies. It stems from, um, inflammation and not, like, actual, like, mucus production and stuff. So, I was on it for a while. And it was great. And I went off of it when I had my daughter because there wasn’t, like, a lot of information on it with breastfeeding. And my husband was still in pharmacy school. And then I kind of, like, forgot it existed and, like, dealt with so many bad BPPV episodes for, like, years. And then after I had Joey, my youngest, I was like, “Oh yeah, Singulair exists, and I’ve been spinning for days, can I take this?” And my husband, he’s a pharmacist. So, he looked it up. And he was like, “This is totally safe. You can take this while you’re nursing.” And I think, like, more had come out about it in – because they’re, like, four years apart. So, I went back on it last year about a year ago. And I honestly haven’t had a horrible, horrible BPPV episode since I started it again. So, I don’t know if it’s because it’s, it takes down the inflammation, which it, like, flares up my inner ear, or if there’s some other mechanism of action that’s working, but it has changed my life.
Laura Cala 1:34:04
No, that’s, that’s wonderful, wonderful to hear. Cynthia’s actually posted a link about medications that are used to treat Vestibular disorders in the Q&A. So, if you are interested in a little bit more about that, I definitely recommend reading that. Now let’s sort of just switch over because I did see it in the chat a little bit earlier before, around, sort of, supplements and sort of dietary. I know for myself, I remember I was diagnosed with Vestibular migraine, and I pretty much – it’s very foreign in Australia. I went online, and I pretty much Googled everything Vestibular. I found David’s page. I found the Dizzy Cook. I found M, and it was really then that I was given the migraine diet, but in layman’s terms it was delicious. You know, it’s the “Heal Your Headache” diet. And then that’s where I incorporated supplements. And I did that for a long period of time before I actually went on to Effexor. So, Katie, I’m on pretty much the exact same dose as you are. But I found things, like, you know, in that migraine diet, stuff like chocolate, like red wines, those types of things triggered me, anything artificial. These days, I pretty much eat nothing that’s really processed. And I find that that really helps me keeping control when I have a Vestibular attack, or if I’m trying to calm that down. Katie, have you used those sorts of tools with your Vestibular and, I guess, with your COVID, as well, in terms of losing your senses? Did you have to take it back to basic basics? Were there supplements that you used? Where abouts were you with that?
Katie Stevens 1:36:00
Sure, I did the zinc, vitamin C, vitamin D regimen pretty strong with COVID. And then I was taking all of my prenatals and fish oil, just normal that I had been. So, the dosages of the supplements were everything I was taking them were kind of built back into those. So, I didn’t take anything extra. But I do ever since. And I do have some so I can’t do caffeine, I can’t do alcohol, I can’t do a lot of, like, soy products. I noticed since COVID, those triggers are much stronger. So just a couple of weeks ago, I got a coffee from a coffee shop, came home, and I drank it, and I didn’t think anything of it because I always do decaf.
And I noticed as the day went on, my heart rate – my resting heart rate since COVID has always run a little high. But it was, resting was, like, 130. I’m like, “Oh, this is not normal.” And I realized they did not give me decaf. And my body did not know what to do with that. And it was, it created, really, I had to pick up my kids are in daycare that night, and I could barely get there. Like, you have to get them; I have to keep them safe, like, you have to get by. And we realized that was the issue. So, my body cannot handle caffeine on any level. And it’s more exaggerated since COVID. So, that’s one thing I have noticed has changed, how my body handles some of those things.
Laura Cala 1:37:28
Yeah, that’s interesting. How about yourself, Crystal?
Crystal Propes 1:37:30
I did a lot of research when my BPPV was really bad. And there was some really good evidence that vitamin D, extra vitamin D can help with it. So, I take a vitamin D supplement. I do think it makes a difference. It can’t hurt with breastfeeding, anyways, to have extra vitamin D. So, that’s one supplement I take, I probably would benefit from diet changes. But with three kids, it’s, like, hard to even, like, think about what to make and what I’m eating versus, like, whether it’s causing. So, I haven’t really noticed, like, a huge correlation. And my kids aren’t good sleepers even now. And, so, coffee is, like, essential. And I do wonder, like, I noticed I feel kind of wonky if I drink too much caffeine, and I’m on, like, I haven’t eaten enough.
So, then I’ll start to feel, like, the whole boat rocking sensation and stuff. When that happens now, and I’m like, “Oh, you know what? I probably should eat something,” or, “I probably shouldn’t drink two cups of coffee and then did not eat breakfast.” That kind of situation where I try to keep it to, like, two cups that way because it does get worse if I drink more than that. But that vitamin D supplementation is the extent of my diet.
Laura Cala 1:38:53
Yeah, okay. What Cynthia has done as well as she’s popped in the chat. An article about supplements written by Alicia Wolf, the Dizzy Cook. That’s, that was something I referenced quite early on in my journey. And I found that really helpful.
From there. Obviously, with our Vestibular community, we have such an amazing support network online via support groups, people’s Instagrams, we’ve got VeDA’s amazing support groups as well. Where did you, I know, Crystal, you mentioned about researching, you know, throughout your journey. Did you find support for your Long-haul COVID and Vestibular online? Was there anywhere to turn? And were you able to find any information? Or was it purely based on what you were receiving from doctors and, I guess, therapists?
Katie Stevens 1:39:55
I really didn’t find a lot for Long-haul in comparison to Vestibular. I would just, you know, you’d see people post things in a Facebook group or things like that. But there really just wasn’t much out there. And my regular practice doctor is not very familiar with Vestibular diagnoses. So, I really relied on my neurologist, but then I was in a period of time where I wasn’t going there. Because they were closed. We were doing everything online. So, it was just kind of, Google was my best friend for getting by with that kind of thing.
Laura Cala 1:40:34
Yeah, what about you, Crystal?
Crystal Propes 1:40:36
Google is never my best friend. OCD. But it is where I turned when I first started with my BPPV. Because I, I was terrified of it at first. I mean, like, I knew after the accident, what it was, and I just didn’t expect for it to persist. But it has for 11 years now. Um, but I get it again, I’ve found treatments that have made it way less often. But I, that’s, I actually, like I said, my husband’s a pharmacist, so I rely heavily on his expertise when it comes to medications to help with things. And I have a scientific background. I was a molecular technologist before I stopped to stay home with my kids. So, research, especially scholarly articles, is kind of my thing. So, I really just kind of looked into the literature to try to find, like, treatments and supplementation that had like a decent scientific backing to it. So yeah, Google helped there. My husband, obviously, as a professional and as my husband, helped. My doctors were really good about the BPPV. Not about the long haul, obviously. And then I did, like, not find much online in way of support for either thing.
But I have since with people, and I’m in this, like, group of people that have, like, anxiety disorders, and I noticed that a lot of them suffer from the same things: from Vestibular issues and from Long-haul COVID issues. So, I’ve found support there talking to them about those kinds of things.
Laura Cala 1:42:19
And what Cynthia has done as well is, she’s popped on there, the VeDA support groups, anyone suffering with Vestibular-like symptoms and their families, which are absolutely unreal. Um, she’s also posted a link to a group emerging to support people with long haul COVID, such as Survivor Corps. So, I recommend anyone that is watching to jump on there if they want to take a further look. Now, oh, there is another question around meditation, mindfulness and yoga. For those that have heard my story before, I was, like, a “run, run, run, go as fast as you can.” And I would, the thought of yoga, meditation, and mindfulness was just not on my radar. And then, when I went through Vestibular, those were, like, my saving graces. And now for me, it would be very rare that I wouldn’t go through a day without practicing at least one of those. Have you used those techniques before Katie?
Katie Stevens 1:43:16
Mm hmm. I used to do yoga before I had COVID. And since then, I just am, my lungs just are … special. So, we’re working on getting stronger. But I do mindfulness exercises pretty much regularly just to kind of center myself, to be more aware of where I am, but not on a sense-overload kind of thing. But I do practice the 54321. The five things you can see, four things you can, you know, touch, whatever. That actually helps me in a moment of when my trampoline likes come alive. That’s what I do. So, I do, I’m a big mindfulness person.
Laura Cala 1:44:03
And I think someone’s used that term before as I do that, that five one as well. It’s like a grounding. It sort of brings you back down, and it really calms you. And what about you, Crystal? Have you, have you used those techniques as well before?
Crystal Propes 1:44:20
Yoga. I feel, I can’t tell you how much better when I do yoga, especially like just a full, like, 30 minutes of, like, some guided yoga with meditation at the end, like, it makes me feel immeasurably better. I wish I could do it more often. But my husband works a lot, and my children climb all over me while I try, which is not relaxing. And also, now that my littlest is 16 months old and, like, getting a little bit older and occupiable by his siblings. I hope to get back into doing yoga daily, because it makes a huge difference in my mind, and my body feels so much more relaxed. I just feel more grounded, more centered. And I don’t know if it actually helps my BPPV, but it definitely doesn’t hurt it, it relaxes all the tension here. And so yeah, I definitely, I definitely rely on that heavily when I have time to do it.
Laura Cala 1:45:15
Yeah, amazing. And amazing Cynthia has posted some articles around meditation and yoga and balance, and even Tai Chi. And I mean, this is, to me, like, this is just an example of why VeDA is just so amazing, is because it’s, like, the Google for Vestibular disorders, it’s very rare that you go into the website, and you can’t find what you’re looking for. So just a big shout out and thanks for everything that the team are doing, Cynthia and Elizabeth and everyone that’s put this together, because, you know, it’s, I think it’s a lot of it, the doctor stuff is important. But it’s talking to other patients, the ones that have actually been through what you have, where I think we get a lot of insight from.
Now, a lot of people are afraid of getting COVID, myself included, because in Australia, COVID is a very cool word. And a lot of people refer to where I am in Western Australia as the island stake, because our premier sort of locked us in. So, for people like me, and the ones that don’t see, look, pandemic, the way you both have, what would you tell them in around giving them hope? Or sort of, to tell them not to be afraid and that you will get through? Katie, can I pass that one across to you?
Katie Stevens 1:46:33
Yeah. So that’s actually, I have a hard time with that question. Only because from, with my experience, obviously, I am okay. I came through. I had a great team of doctors. I being pregnant at the time, they took extra precautions, because I was 28 weeks pregnant. But then there’s my mother-in-law who had the same thing. And she didn’t make it. So, it’s really just, you know, in the long run, yeah, you’re, you’re going to be okay, whatever that looks like at the end, I don’t know. But I know with Delta, it was much more severe, much more impacting to your lungs into your breathing, where the variant now is a little, I hate to use the word “easier.” I don’t mean that in a negative way. But it’s a little more like a cold and whatnot. But the majority of people are okay, and it doesn’t, I don’t know, it’s I just have a hard time with that only because I saw both extremes. Yeah. So, I don’t know the best way to answer that. And I still am a little fearful of it as well. But know that I’m, I’m okay. I went through the worst and came out stronger. So.
Laura Cala 1:47:54
So, there is some hope. Yeah, for sure. How about, what about yourself, Crystal? What would you tell people?
Crystal Propes 1:48:01
So, I had a drastically different experience. And I don’t want to, obviously, downplay your experience at all, Katie, like, I feel like it’s good to have both sides. And COVID, obviously, can be extremely dangerous. The first time we had COVID. Everybody in my family – myself, my 11-week-old baby, both of my toddlers, my husband, both of my parents who are in their 50s, my brother, his partner who are in their 20s, and my grandfather, who was 78, and my uncle who was in his 50s – they, we all had it at the same time.
My daughter gave it to almost everybody except for my grandfather, who we stayed away from, and he still got it anyway, from somebody else. But anyways, we were all fine. Not a single one of us was hospitalized. My kids had no symptoms. And now we did have, like, my parents did have some Long-haul symptoms. But they have since resolved, both of them. And my brother’s Long-haul symptoms have also since resolved. And then we got it, we got Omicron. Of course. My daughter brought it home from school. Again. And infected our whole family. Again. Um, and it was different, you know, the second time around, it was much more cold-like, almost milder than a cold, I think, because we had had, I think what we had was Alpha, I can’t, we didn’t sequence it, so I can’t be sure, but um, and so, it can be scary, but it can also be totally fine, like, and, and I was listening to the doctor who was on before we came on. And he was talking about, like, how there’s got to be, like, some genetic, and I have noticed, like, that everybody in our family was fine. And then, and then it seems to tear through other families where it’s just horrible. So, like, I guess I hope one day that they can figure out exactly why some people get it worse than others and treat based on that.
Laura Cala 1:50:01
Amazing. Well, before we wrap up, I might pose one more question to the both of you. COVID and your Vestibular disorders: What’s the one thing that you’ve really drawn, and you’ve learned from it? What I mean in regard to this is sort of yesterday when we were talking about what is Vestibular, we’d sort of referred back to, “it’s taught us so much about ourselves, and our ability to read ourselves and look after ourselves and love ourselves.” So obviously, Long-haul COVID is a very challenging disorder, as is our Vestibular. What have both of the experiences really brought to your lives? Katie, can I kick that one off to you?
Katie Stevens 1:50:42
Sure. When I, before I was diagnosed with PPPD, it was this, I was almost depressed, because I knew something was wrong. No one could figure it out. I would come home from work, just lay in my bed. And it was just not a good way of living. I finally get diagnosed. And it kind of felt, like, okay, there’s some sort of, I’m not alone, I’m not crazy, you know, there’s an answer. And then you learn how to kind of live with that. And then through COVID, it was, I went through a lot. And to come out of that stronger and learning how to take care of myself, to nurture myself, to put my family first, I used to live the ‘go, go, go’ life. I would work, I would be involved in committees, be involved in have meetings every night. I, you know, I put all of that not ‘first,’ naturally. It just was, I was just busy. Where now I know that my family and I, like, we, us together, that’s most important. And I’m stronger because of it. I feel like my priorities kind of aligned a little bit better. And I know how to take care of myself, give myself grace, if I’m not able to do something.
Laura Cala 1:51:57
No, absolutely. How about you, um, Crystal?
Crystal Propes 1:52:03
I want to echo off what she says, like, give yourself grace there. Like, I can’t, I try to do everything, I’m that type of person too. I want to be everything for everybody. And somehow simultaneously take care of all three of my kids at the exact same time, even though I only have two arms, and I have a whole husband that can help, but I still want to try to do it all. BPPV like kind of takes you back a little bit with that. It’s like, “Okay, the room is spinning. You cannot do this. You just sit you need to be still. You need to relax,” which I am not good at. So, it does, it forces me to relax and to chill out for a little bit, you know, so I can be the best mom I can be and be the best person I can be.
And then, with COVID, it was again, it was, like, so much anxiety because of how bad it can be. And watching my kids, you know, making sure they weren’t, you know, super ill, but it did give us, like, a chance to get into, like, sit and relax and spend time with your family and not to be so fast paced and so busy all the time and trying to do everything at once. You know, sometimes, if your house is a little messy or something doesn’t get done, it’s okay because you’re healthy with your, and your kids are healthy and just take a step back and let yourself heal and let yourself relax. And that was difficult for me. But that is what, like, BPPV and having COVID. Those both, you know, teach me that and resonate with me there.
Laura Cala 1:53:30
Ladies, you’ve been absolutely amazing today. The information that you both shared. I’ve learned so much from it as well. And I know our audience definitely have too, so we’ll wrap it up there. Thank you, everyone, for joining us for our Life Rebalanced Live brought to you by the Vestibular Disorders Association. If you’d like to support programming like this, please visit VeDA’s website and make a donation. You can also register for the Evening for Life Rebalanced Fundraiser at https://vestibular.org/article/lrl-fundraiser/. And don’t forget, tomorrow’s session is on Vestibular rehab therapy, which we have briefly discussed today. But thank you, everyone. Have a great day and thank you so much, girls. Really a job well done. And thank you so much for being on this journey with us. Thank you. Thank you.