Managing Vestibular Disorders, Dizziness, Vertigo

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Intro: (00:03)

Welcome to the Health Babes Podcast with Drs. Becky Campbell and Krystal Hohn, where we talk about everything health.

Dr. Becky Campbell: (00:14)

Hey guys, I want to let you know that our new book, The Health Babes Guide to Balancing Your Hormones, is out in bookstores and on Amazon now. We try to break down the hormones for you in a really easy-to-understand format and make all the information very digestible. We have some really good recipes to support your hormone levels and some other great tips and tricks you can do at home. So go get your copy now!

Dr. Becky Campbell: (00:38)

Hey everyone, welcome to the Health Babes Podcast. I’m your host, Dr. Becky Campbell, with Dr. Krystal Hohn, and today we have Dr. Emily Kostelnik. She is a clinical psychologist who really specializes in vestibular disorders. So if you’re not sure what that is, think dizziness. If you’ve had any kind of dizziness, whether it’s something you’ve been dealing with for a long time or something that you’ve had more recently, you’re going to want to listen to this. And we talk a lot about migraines and vestibular migraines, and it was just a really interesting episode. So we hope you love it! 

Dr. Becky Campbell: (01:20)

Hey everybody, let’s welcome Dr. Emily Kostelnik to the show. Emily, how are you today? We were just talking about a little situation going on in your house.

Dr. Emily Kostelnik: (01:30)

I’m doing okay. I’m so excited to be here to talk about all things chronic dizziness and functional medicine because it’s been my personal and professional story. And I’m just so excited to be here and share—share with everyone and create awareness around vestibular issues.

Dr. Becky Campbell: (01:47)

Yes, I’m excited to have you too, because not a lot of people talk about this. Even in the world of functional medicine, I had never even heard of a vestibular psychologist before I started following you. But it’s really interesting, and it’s something that we see a lot of in practice, and it really needs a lot more awareness and understanding brought to it. So that’s why I asked you to come on because I’m like, “People need to hear her; people need to know what this is,” because so many people struggle with dizziness, right?

Dr. Emily Kostelnik: (02:19)

Yes, so many people. It’s really a huge gap. You said you’ve never heard of a vestibular psychologist, and that’s because there really aren’t any. I mean, to my knowledge, I’m one of two psychologists in the country who exclusively work with this population. So a huge amount of education needs to roll out because, as you mentioned, a lot of people contend with these issues.

Dr. Becky Campbell: (02:46)

Yes. So why don’t you start by telling us your story? How did you even get into this?

Dr. Emily Kostelnik: (02:51)

Sure. So you mentioned I’m a clinical psychologist, and I specialize in health psychology, which is kind of like a subspecialty of clinical psychology, and then subspecialize even more in vestibular disorders. And we’ll talk more about that. I’m also someone who lives with multiple vestibular diagnoses. So just sort of broad: Clinical health psychology is a specialty of clinical psychology that focuses on the interplay between medical illness and mental health. And it can include things like addressing mental health concerns that come with chronic illness, like anxiety and depression, [which] are very common. But it’s a really bigger picture than that; it’s about health behavior change. It’s how to optimize our behavior to address health concerns. 

Dr. Emily Kostelnik: (03:38)

So, some common areas that a clinical health psychologist might work with are optimizing behaviors to maintain blood sugar, like with diabetes, how to stay on a dietary regimen, things like weight loss, chronic pain—[which] is a big one—and smoking cessation. And then, for me personally, I specialize in vestibular disorders. So it’s kind of a little background on what a health psychologist does. 

Dr. Emily Kostelnik: (04:03)

And then, in terms of my personal story, I graduated from graduate school. I was on my postdoctoral fellowship, and I was diagnosed with a very rare vestibular disorder called superior canal dehiscence syndrome, or SCDS. And I just want to acknowledge: I know we’ve used the word vestibular; a lot of people don’t know what that means. A lot of people don’t know what that means until something goes wrong in that system, and then they learn the hard way. But vestibular in general is balance—knowing where your body is in space. Superior canal dehiscence is a tiny hole in the temporal bone. Your brain sits on the temporal bone above your inner ears, and it causes a whole host of auditory and vestibular symptoms.

Dr. Emily Kostelnik: (04:54)

I’ve undergone two very invasive surgeries to repair it. One was a craniotomy, which was unsuccessful. So they had to go back in and try to replug this hole. Then throw having a baby into the mix. Postpartum, I developed other issues, including vestibular migraines. A lot of vestibular diagnoses are comorbid with one another, so many people have more than one vestibular diagnosis. Anyway, that’s sort of my story in a nutshell. 

Dr. Emily Kostelnik: (05:26)

I’m so excited to talk to you today because functional medicine has become a huge part of my personal treatment for conceptualizing my issues. And I know this will speak to you: Conceptualizing my issues from more of a histamine and mast cell perspective has been a total game changer, [not] just in the way that I think about things and the way I think about flares, but also in opening up so many more treatment options than I even knew there were. I got to a place where I was chronically dizzy and really debilitated, and it was like: “Here are your options. Try this next medication.” “Next medication,” “next medication,” and I was like, “There’s got to be a better way.”

Dr. Becky Campbell: (06:08)

Yes. And antihistamines are a big thing that are given for that, for sure. 

Dr. Emily Kostelnik: (06:14)

Right! So we know that histamine is implicated in the vestibular system, especially with migraine too. So I started to dig into the functional or integrative world and learn all these things about toxic load, environmental toxins, mold toxicity, dietary stuff, and how all these things can make a really big impact. So yes, that’s sort of, again, my story in a nutshell. But I’m so excited to talk to you and learn more about your experience with this stuff as well, because I’m sure you’ve seen this in your practice.

Dr. Becky Campbell: (06:50)

Oh, a lot. Yes. So let’s kind of back up a little bit for people listening, and they’re like, “What are they even talking about?” Do you know what I mean? What would someone feel if they are listening to this? What may be a symptom? What are some symptoms of vestibular disorder? We know it’s about dizziness, but can you kind of go in a little bit more into that? A lot of people know that they have symptoms, but they don’t know what they are or what they relate to. They may not even know that this episode is for them. So what should they be listening for that they may be experiencing?

Dr. Emily Kostelnik: (07:27)

Yes. So I think we can talk about symptoms, and we can talk about the vestibular system too, in terms of education and what it is. But in terms of symptoms, I find people can either have an acute event or more chronic symptoms. An acute event could be: You have a viral infection and it attacks your vestibular nerve, or you have a BPPV episode—benign paroxysmal positional vertigo—where the crystals in your ears get loose and they’re moving around. You can have intense… It could be room spinning. You could feel like you are personally moving. You can even have vertigo sensations in different areas of your body. Your feet might feel like they’re moving when they’re not. You might feel lightheaded. You might feel like you’re walking in a bounce house. You might not feel like you know where you are in space, so dissociation is a really common feeling, like feeling out of body or like the environment is not real. Brain fog—hugely!

Dr. Becky Campbell: (08:33)

Huge!

Dr. Emily Kostelnik: (08:34)

It’s hugely important because the vestibular system is really diffuse—like, diffusely located in the brain—and it takes up so much cognitive energy. So when you’re trying to utilize that energy to keep yourself balanced all the time, it negatively impacts executive functioning. So people have trouble planning and organizing. And [with] higher-order functioning, [people have] word-finding difficulties, that kind of thing. Difficulty walking, difficulty holding your head up, having no energy. Then, on top of that, because it’s so taxing, the estimate is that about 45 to 60%-ish of people with vestibular disorders will also experience anxiety and depression. So it kind of becomes like this perfect storm, and it makes it really, really debilitating.

Dr. Becky Campbell: (09:23)

Yes, because those symptoms make you very anxious. I mean, if you’re feeling unstable and you’re feeling… You know, I used to get really bad vestibular migraines, and I would feel like my head was being pulled to the ground. So I was very anxious, and I was also anxious to be around other people and have that happen because I didn’t know what my body was going to do. So I can really see why that goes together. And that’s why what you do is so important because there really is an emotional aspect that goes along with feeling this way and experiencing these types of symptoms personally. 

Dr. Emily Kostelnik: (09:59)

Yes. It’s a huge piece of the puzzle. And there’s the stigma around mental health. And the anxiety and depression piece can be kind of hard to swallow. But the bottom line is that when you have this vertigo or dizziness that’s coming out of the blue, it’s really scary, and you feel unsafe in your body. People kind of develop this profound mistrust of their bodies. And our brains sort of rewire it in a negative neuroplasticity way. The term neuroplasticity is used, and people kind of think of it only in a positive way, but it can rewire negatively too. So what ends up happening is that dizziness equals anxiety, and anxiety equals dizziness. So anytime you have either of those things, it becomes dizziness anxiety, and we call that the dizzy-anxious-dizzy cycle.

Dr. Emily Kostelnik: (10:53)

And it’s really hard to break because it’s like, “Well, am I anxious, or is this actually a vestibular event?” And it kind of spools up in that way. So that’s something I work a lot with people on—calming the sympathetic nervous system. And I know that’s kind of transdiagnostic in terms of other people that you work with too; that’s a really big piece of the puzzle. But for vestibular disorders in particular, so many people are in this state of sympathetic hyperarousal, constantly perceiving danger because, again, it’s scary when you feel like you can’t walk straight or like you’re being pulled in one direction or another. And I think we’ll kind of get into interventions probably later. But creating a sense of calm and a sense of steadiness and trust in your body, again, is a huge piece of recovery.

Dr. Becky Campbell: (11:46)

Yes. That makes so much sense because, like you said, even the fear of it happening can bring it on. So let’s talk about what the vestibular system is. What is happening with your body when you’re getting these symptoms due to a vestibular issue?

Dr. Emily Kostelnik: (12:08)

Sure. The vestibular system is in charge of balance and is kind of like telling your brain where you are in space. It allows us to walk around and adapt to our environments really quickly. It’s comprised of three elements. It’s the inner ear itself. We have two sides of those: Vision and then proprioception, or kind of touch—if I’m standing up, the way my feet feel on the ground, or sitting in this chair, the way my back feels against the chair. And it’s this kind of delicate balance between those things that provide input into our brains to tell us where we are and how to move appropriately. But then, when things go wrong for various reasons… And we can talk about some of the different vestibular disorders that can basically [cause you to] become out of balance. Would it be helpful to talk about some of the different vestibular disorders?

Dr. Becky Campbell: (13:07)

Yes, very.

Dr. Emily Kostelnik: (13:09)

So just kind of an umbrella: The lifetime prevalence of any type of vestibular vertigo is thought to be around 7%. And I think that’s probably an underestimation, but that’s my personal opinion. This is not a rare occurrence, [which] is basically what I’m getting at. A fair number of people experience this. So we have two sides. We have peripheral vestibular disorders, and that’s where there’s something that’s gone awry with the inner ear itself, or central vestibular disorders, which would be the brain and spinal cord. Or you can have both, and many people have both. So peripheral vestibular disorders would be ones like Meniere’s disease, benign paroxysmal positional vertigo—BPPV, [which] is the most common—vestibular neuritis, or labyrinthitis, where a viral infection essentially attacks your vestibular nerve or the bony labyrinth. A head injury could damage the inner ear. Superior canal dehiscence syndrome, like the one that I mentioned, is one of the more rare ones. So those are the peripheral, inner ear-based ones. 

Dr. Emily Kostelnik: (14:21)

The central ones are things like vestibular migraines. PPPD, also called 3PD, is persistent postural perceptual dizziness. That one is secondary to another, either a vestibular event or anxiety, and that’s really where negative plasticity takes over. Risk factors for that are anxiety, negative illness narrative—so the way that you talk to yourself about the illness—body vigilance. It’s almost like your brain starts to rewire itself into a sensory processing disorder where you become very sensitive to everything, sensitive to movement. And we can talk more about central sensitization and how that plays a role. So vestibular migraine, PPPD

Dr. Emily Kostelnik: (15:10)

Some other ones are mal de debarquement; that’s another more rare one. To get that diagnosis, you’d have to be in motion first, say on a boat. Then you get off the boat, and you kind of feel like you’ve never left the boat, like you continue to have that rocking sensation. And then there are other ones like damage—I guess damage would be the term secondary to autoimmunity. There are a bunch of them, but that’s kind of the way to break them down—peripheral versus central. But again, there are a lot of comorbidities between the two. 

Dr. Becky Campbell: (15:46)

Yes. And the herpes virus can get into the ear on the vestibular nerve.

Dr. Emily Kostelnik: (15:52)

Mmm. Okay. So that might be a cause of vestibular neuritis.

Dr. Becky Campbell: (15:55)

Yes. And I’ve seen people do antivirals for that, and it goes away. Like, they will get a sore on the vestibular nerve. So if someone is experiencing this and they don’t know what it is and they don’t know all the things you just named, and they’re like, “Okay, I can identify with that, I can identify with that,” how do they get a diagnosis of any of these?

Dr. Emily Kostelnik: (16:21)

That is the million-dollar question! The problem with all of this is that, as of now, vestibular disorders are not really covered in any depth in medical school. And even for specialists like ENTs or neurologists, they don’t cover this in much depth either. So it’s [about] finding the physician who is fellowship trained—[someone who has] done residency and then specialized training in vestibular disorders. So typically, you want to look for someone who is either a vestibular neurologist, also known as an otoneurologist, or an ENT—ear, nose, and throat—who specializes in the ear. So that would be an otologist or a neurotologist. And I can’t sugarcoat it; it can be really hard, especially with geographic restrictions. There are really—I don’t know—maybe more than a handful, maybe like 10, 15, or 20 of these types of specialists in the country. So it’s hard. And then people want to get in to see these people find out: “What’s going on? What’s my diagnosis?” And then they’re waiting six-plus months. So that’s a major barrier, for sure.

Dr. Becky Campbell: (17:39)

Yes. When I was in college, I was getting a lot of issues like this, and I was like: “What is wrong? What is going on?” This was before I knew I had histamine issues and mast cell activation syndrome. I eventually went to the vestibular neurologist to have a scan to make sure there was nothing in there. But the first ENT, I think it was, told me I had Meniere’s and put me on a diuretic. Then I had a whole other list of issues from being on a diuretic when I shouldn’t have been. You know, you get diagnosed with all this stuff that’s not even really happening. It is frustrating.

Dr. Emily Kostelnik: (18:21)

The misdiagnosis rate is huge. I see people who actually have vestibular migraines diagnosed with Meniere’s all the time. Or, the favorite, most common is “It’s just anxiety,” and like, “Go on an antidepressant,” and that’s that. 

Dr. Becky Campbell: (18:38)

It gives you anxiety. It definitely makes you anxious when you feel that way. I was very anxious when I had it because I didn’t know what it was. Of course, I thought the worst. I’m like: “It has to be my brain. I must have a tumor.” It was really scary. I was getting scans, but nothing was coming up, and no one had any answers. It was one of the things that led me to figure out that I had mast cell activation syndrome and had this issue with breaking down histamine in my body. And once I figured that out, I started to feel better. It was the only thing that ever helped me with that. When you talk to people a lot, do you kind of say “You might have an issue with histamine”?

Dr. Emily Kostelnik: (19:23)

Yes. When I first work with people, I do a biopsychosocial assessment to try to get a sense of everything they’ve tried, what’s going on from a medical perspective, from a mental health perspective, and try to pick out: Where are the holes in their treatment, essentially?—because this type of illness, this type of condition, requires a multidisciplinary approach. We’re talking pharmaceuticals a lot of the time, functional histamine/mast cell stuff/supports, vestibular rehab therapy with a physical therapist, mental health supports, and dietary changes. It requires a full lifestyle change. So yes. And I can identify with you with the whole histamine mast cell activation, and I talk about that with people too. And I share my personal story of how that’s definitely changed my life in terms of how I conceptualize what’s going on in my body.

Dr. Becky Campbell: (20:26)

Yes, for sure. So for those of you who don’t know—I think everyone with histamine intolerance who listens to this knows—histamine dilates our blood vessels and has some different jobs in the body. It assists the immune system. But when you can’t break down the histamine that you’re releasing in response to something, you’re stuck with extra histamine in the body. That can cause a slew of symptoms. It can make you inflamed in the sinuses, and you can have more mucus released in the sinuses and the eustachian tubes, which are in your ear, and that can make you really dizzy. All these things kind of go together. Vertigo—they call it vertigo. I think that’s a term that some people use when it’s maybe something else too. But dizziness in general is a very big symptom of histamine intolerance. So these things can really go together.

Dr. Becky Campbell: (21:22)

So starting on a low histamine diet can really reduce that load, at least [in terms] of the histamine you’re taking in. And then going further and going into: “Okay, well, why don’t you have histamine tolerance? Do you have an issue with your gut? Do you have an issue with your hormones? Have you been exposed to environmental toxins like mold? What are all these reasons why our mast cells are releasing excess inflammatory chemicals like histamine, and why can’t we break them down?” So that’s a very big key to this. But what else? What else do people do for this?

Dr. Emily Kostelnik: (22:01)

In terms of treatment? 

Dr. Becky Campbell: (22:00)

Yes.

Dr. Emily Kostelnik: (22:04)

First and foremost, it’s about getting the right diagnosis. Like you mentioned, you were put on diuretics unnecessarily. Say it were to be their migraines. That’s a really common one. It might be migraine prophylactic medications and then having rescue medications also. It might be, again, vestibular rehab therapy to try to kind of rehabituate your brain to engage that positive plasticity. Many people try a diet called the ‘Heal Your Headache Diet’. I’m not sure if you’ve heard of that one. 

Dr. Becky Campbell: (22:36)

No.

Dr. Emily Kostelnik: (22:38)

It was written, I believe, by a neurologist from Johns Hopkins. It’s a low tyramine, low-ish histamine [diet]. I personally tried it, and I was able to identify that the histamine foods were the ones that were causing me issues. I transitioned into a more low histamine diet, which has been hugely impactful for me.

Dr. Emily Kostelnik: (23:03)

I’m trying to think of what else. Some people might use neuromodulation devices like gammaCore. It’s a vagus nerve stimulator. Cefaly is a trigeminal nerve stimulator. There are some pretty off-label medications that are used. Some people will use beta-blocker eye drops as prophylactic and rescue medications. A lot of people use benzodiazepines or antihistamines as rescues because, again, there’s the anxiety component too. But then the behavioral piece is so important because the nervous system, which we talked about that sympathetic arousal, but also the limbic system too because we develop these beliefs about our body and mistrust in our body. And, like you said, the anticipatory anxiety of like: When is this going to happen again? And am I going to be stuck somewhere? And what does my life look like? And am I going to be able to be the parent I want? Et cetera. You can go down a rabbit hole very quickly when you’re living with these symptoms. So [it’s about] trying to attack from that perspective too.

Dr. Emily Kostelnik: (24:06)

Exercise. I wanted to mention before: All the things we know that are anti-inflammatory are super important. When I was trying to put these pieces together for myself, I started to do some literature reviews. There are some pilot studies—newer data. But for nearly all the vestibular disorders that I looked at, there was data to show that these people have chronic systemic inflammation. So I’m looking at that and thinking, “Okay, there are these migraine drugs being rolled out,” like for CGRP and all these things. But in my head, I’m like: “Why is everyone so inflamed? And why can’t we address that part of it rather than the downstream effect of trying to deal with it later? Why is everyone experiencing this chronic inflammation?” So that’s the approach that I take with myself, and I try to educate other people about it too.

Dr. Becky Campbell: (25:03)

Yes. And it’s the food, it’s the environment, it’s the stuff we’re putting on our bodies, it’s stress.

Dr. Emily Kostelnik: (25:11)

Stress is a huge one, yes.

Dr. Becky Campbell: (25:14)

Yes, it really is. On your end, I know that it probably takes a few different types of practitioners, right? But on your end, if someone comes to you, what are you working on the most with them?

Dr. Emily Kostelnik: (25:29)

Initially, again, I would do that full assessment and make sure they have the right type of physician on board. Make sure they’re getting the right diagnosis. We’ve ruled out the scary things—the brain tumors and the things we tell ourselves we have. So MRIs and CTs can be an important piece of the puzzle because we want to make sure that everything’s okay from that perspective. Make sure they have a good physical therapist on board. I try to help them find functional medicine doctors, but it can be hard to find people who are really well-versed in the histamine issue. So I’m so grateful for what you do and the advocacy and education you provide in that realm. Some people work with dieticians. Massage can be really important. Some people like acupuncture or chiropractic.

Dr. Emily Kostelnik: (26:18)

And then from there, in terms of what I work on from session to session, first I like to work on sympathetic arousal, trying to dampen that with things like breathing exercises, mindfulness meditation, or progressive muscle relaxation. Biofeedback is a big one that I’ve been getting into lately that I love, and I’ve been having a lot of success with it myself. I’ve started incorporating binaural beats. I know that in the functional world, people really like that too. And I’ve also started using those and loving that. And then, from the limbic perspective, I would say I’m pretty eclectic, so [I use] a lot of cognitive behavioral therapy techniques and a lot of acceptance and commitment therapy techniques. Acceptance and commitment therapy is a mindfulness-based therapy, and it’s really about changing our relationship with our thoughts and our relationship with our bodily sensations to try to get us out of that constant fight or flight.

Dr. Emily Kostelnik: (27:17)

But again, that anticipatory anxiety, that kind of doom and gloom thinking, because we know that the way we think has this trickle-down effect in the way that our cortisol and adrenaline are released and ultimately inflammation. So I try to look at it from a really big-picture perspective and come at it from as many angles as I can because these disorders have similarities, and I think inflammation is a big underlying one. But of course, if we’re talking about the root cause, everyone is an individual. So some people respond really well to dietary changes; some people don’t. Some people respond really well to medications; some people don’t. But one other theme I see in this population is [that they are] extraordinarily sensitive, so it can be really hard to onboard medications, supplements, food lights, sounds—the whole thing.

Dr. Becky Campbell: (28:14)

They have to microdose supplements and even medications a lot of the time, and the limbic work, too, right?—because that can help people get past the fear of taking those things too. That can be very ingrained in you—having bad experiences and that fear of it happening again. And that’s what we see a lot of in practice. We work with so many really sensitive people. We have them do limbic retraining and all that before we even think of giving them any type of supplement or anything.  

Dr. Emily Kostelnik: (28:49)

Yes. And I think that some of the vestibular specialist physicians are catching on to the level of sensitivity, so I’m finding more people are micro-dosing, which is great. But then there’s also a lot of misconception about what micro-dosing means. One of the most common medications used for vestibular migraine and PPPD is Effexor. People will prescribe the lowest amount that the general pharmacy makes, which is 37.5. I’ve had multiple people be like, “Oh, I’m micro-dosing at 37.5 milligrams,” and they end up in the hospital with these crazy reactions. So it’s really realizing just how sensitive people can be. I’m one of those very sensitive people. It can be hard to manage.

Dr. Becky Campbell: (29:38)

Yes, I was too. I couldn’t take anything at one point. I couldn’t eat or take anything. So speaking of something like Effexor, how does that help with this? 

Dr. Emily Kostelnik: (29:52)

Typically, people with vestibular disorders take Effexor at pretty low doses. So the therapeutic dose from a psychiatry perspective is 75 milligrams. At lower doses, it works more on serotonin than it does on norepinephrine. And just to back up Effexor and SNRI for people in case they didn’t know, they can help with the anxiety piece of it. But serotonin itself is implicated in the vestibular system. Effexor is thought to have some migraine prophylactic properties. And many people present with that comorbidity—vestibular, migraine, and PPPD—so the migraine attacks, but then in between the attacks they feel dizzy all the time. So the attacks would be the migraines. The dizzy [feeling] all the time in between is typically more like a PPPD picture. I just use that for example’s sake, but that’s one of the most common medications that I see prescribed.

Dr. Becky Campbell: (30:55)

Yes. What people don’t understand is that a migraine is actually not just the headache. It can be the dizziness, or it can be the other symptoms. You can have other symptoms and have a migraine, and the pain can just be one symptom of a migraine.

Dr. Emily Kostelnik: (31:13)

Right. I think the stat is something like 50% of people with vestibular migraines don’t have head pain. I’m one of those people. So they’ll go to a neurologist, and they’ll be told: “You can’t have a migraine disorder because you don’t have pain,” which is not true. So then they end up again, like, “I don’t know what this is,” and “I must be crazy,” or “I must have a brain tumor,” or whatever. So it’s really about building education and awareness around it.

Dr. Becky Campbell: (31:42)

So if someone’s listening to this and they’re like: “Okay, what do I do? Where do I start?” How would you walk them through what to do?

Dr. Emily Kostelnik: (31:53)

This is a great question. I think getting the right diagnosis can be important, but it doesn’t have to necessarily be the first step because you could be waiting six-plus months to see a specialist. A few things: I think getting a psychologist or mental health provider on board to just be a support for you to help dampen that sympathetic arousal, to maybe provide some education about what’s going on, and to teach you how to manage this stress while you’re trying to get through this period is hugely important. You could see a physical therapist, and they can do more functional testing to see what deficits you might have in terms of the vestibular system, and they can prescribe certain exercises.

Dr. Becky Campbell: (32:38)

It can be really good, actually. That was one of the things I did, too. I started doing exercises from a vestibular… What are they called? What is their—

Dr. Emily Kostelnik: (32:49)

It’s just a physical therapist who specializes in vestibular disorders, but that therapy is called VRT, or vestibular rehabilitation therapy.

Dr. Becky Campbell: (32:58)

Okay. Yes. They can be very helpful.

Dr. Emily Kostelnik: (33:01)

Yes. So that can be a good place to start, too. I think diet can be another really good place to start. And a lot more conventional doctors are prescribing that ‘Heal Your Headache Diet’ that I was telling you about, but the problem with it is that I find that patients are saying, “Here, try this,” and then they don’t get follow-up about it. So with the elimination diets, I’ve seen kind of the trickle-down effect of it causing a ton of food anxiety and like, “I can’t eat all these foods.” People, for sure, have food triggers. For sure, they might have histamine intolerance. But I think it’s about finding the right guidance around diet. I don’t know if you can speak to that at all, but I’ve worked with many people who get to a place where they’ve created so much anxiety that it’s almost become disordered eating. Have you really seen that in your practice?

Dr. Becky Campbell: (34:04)

Yes. We have to really be careful about being able to identify that in somebody before we go ahead and tell them what to do for their diet. So we talk to them a lot about that. And that’s why, with my first book, The 4-Phase Histamine Reset Plan, I have a yes/no/maybe list. A lot of the foods on the maybe list can be an issue for histamine, but they’re not the biggest triggers. So people start by removing the ‘no’ foods. And I’m like, “Look at the ‘yes’ foods; eat as many of those foods as you’d like. Think about what you can have. Try the ‘maybe’ foods and just eliminate the ‘no’ foods.” And then we follow up with them in two weeks. We have them write everything down, but not forever, because that can also lead to disordered eating. 

Dr. Becky Campbell: (34:59)

But we want to do that clinically. So we see: “This is what you ate in a day, and at 2:00 you felt dizzy” or you got a headache or whatever. “So let’s see why.” And we just see if we can see a pattern and all that stuff. With some people, we really tiptoe into it. And some people don’t have an issue at all with dieting; they’re very easy to do that with. So it really just depends on the person. But I think that at any level, you can do something to help reduce that histamine load. And we’re doing this while we’re waiting to figure out, with the testing that we’ve done, why they have an issue with histamine in the first place. So that’s our approach, and it works really well. So many people, with just the diet alone, see a big change, for sure.

Dr. Emily Kostelnik: (35:50)

For sure. I was one of those people. And low-carb also helped me a lot in the beginning because I didn’t realize how dysregulated my blood sugar was.

Dr. Becky Campbell: (35:59)

Yes.

Dr. Emily Kostelnik: (36:01)

One question—I get people messaging me all the time—that maybe you can cover is if someone were to come to you with vestibular issues… People ask, “How do I know if I have histamine intolerance or mast cell [activation]?” They want to know what blood tests they can use, and I try to explain, “There aren’t necessarily great ones.” So I think it would be helpful for you to talk a little bit about that because people ask me that probably daily.

Dr. Becky Campbell: (36:30)

Yes. So we just have you test it with the food because it’s the cheapest way to do it. It’s the most accurate, in my opinion. It’s really easy to get a reaction from eating a high-histamine food if you have an issue with histamine. It’s pretty reliable. I mean, they come out with tests. Testing histamine in the blood is not about that, it’s about methylation, so that isn’t how you do this. Some people will be like, “Oh, I have a lot of histamine in my blood,” or “I don’t.” “I don’t have a lot of histamine in my blood, so that means I can’t have an issue with histamine.” I’m like, “That’s not what that’s saying.” So anyway, what we say is to eat fermented foods, soured foods, and aged foods. It could take you a day to figure it out, or it could take you a week. But eat those for a few days. If you get an increase in your symptoms or new symptoms, especially if you’re dizzy, and your dizziness is really exacerbated, then stop eating those foods and eat just the foods on the ‘yes’ list and see what happens. And nine times out of ten, their symptoms will die down very much. And then they go, “Okay, I can identify that this is definitely a trigger.” Now it’s not the only issue because, as you know, with histamine intolerance, there’s always a driver. But it’s a really good place to start, and it’s a really good tool to use to help manage that while you’re digging deeper and finding out why you have it in the first place.

Dr. Emily Kostelnik: (38:03)

And I really like to work with people on the acceptance piece. When I say acceptance, I don’t mean you’re going to feel this way forever or you’re going to be on this diet forever, but people get so in their heads about: What does this mean? Am I ever going to be able to eat anything again? What does this look [like] for symptoms? So working on accepting just what’s going on in the present moment while you’re taking these baby steps to listen to your functional doctor, physical therapist, psychologist, or whatever—that alone can really be almost freeing for people because they feel super trapped.

Dr. Becky Campbell: (38:42)

Yes. It is. That’s why what you do is so important because people really need to understand those things, and they really need support in that way. And by just doing a diet that they saw online or whatever, they aren’t getting that support all the time. And especially when it comes to these things, if you don’t look sick, you’re not going to get a lot of support from people around you, unfortunately. We see that all the time, and it’s so sad. People say: “No one believes me because I look fine. No doctor believes me. My spouse doesn’t believe me, and my friends don’t believe me.” They don’t have a good support system, and it’s really hard.

Dr. Emily Kostelnik: (39:24)

It is. I’ve had countless people say to me, “I would rather have a cancer diagnosis.” We’re social beings. We need support. So when we’re dealing with these debilitating symptoms on top of trying to convince people that we’re experiencing them, it just compounds the suffering and makes it so much harder. I’m so thankful for providers like you. It feels so refreshing, honestly, to talk to you because it feels like you get it. And you’ve been there, you’ve experienced it, and it sounds like you’re doing really well now. I know that people also really like to hear stories of hope and success stories and realize that there can be a light at the end of the tunnel.

Dr. Becky Campbell: (40:13)

Yes. I think that’s why I talk about it so much. I used to talk about thyroid, blood sugar, gut health, hormone health, and functional medicine in general. And when I started talking about histamine, it was such a big response, and I was like: “Sometimes I don’t want to talk about histamine. Sometimes I want to talk about something else.” There are a lot of things I do, and there are a lot of things I work with people on. But I do see that histamine is something that’s really important to talk about because there are a lot of people who aren’t [talking about it] and a lot of people who know they’re suffering but don’t know what it is. And the education needs to happen not only for them but for their family members [as well]. And I can tell you, I’ve talked to plenty of spouses, and I can show them stuff on testing and show them what’s going on with different things. And I explain to them, “Nobody would choose to make this up in their head—at all.” But unfortunately, people really think that’s what they’re doing. It’s weird to me, but it’s true. So are there any other natural ways, for anyone listening, that they can… So diet, getting support from someone like you, maybe working with a physical therapist, definitely calming down the nervous system, and ultimately getting that diagnosis. But really, all these other things seem to be the most effective.

Dr. Emily Kostelnik: (41:48)

Yes. In terms of supplements, it’s funny because the supplements that have been studied for migraine that are prescribed by, I would say, most conventional doctors at this point are magnesium, coq10, and riboflavin—none of which helped me. Looking back, I feel like those things were probably just a drop in the bucket for everything else that was going on behind the scenes for me. But those are kind of the biggest that you’ll hear talked about in the migraine community. I personally have found the biggest help from the more histamine/mast-cell-stabilizing-type supplements. Ginger has been hugely helpful to me.

Dr. Becky Campbell: (42:32)

Ginger is so anti-inflammatory and antihistamine, for those listening who don’t know that. And you can find it in supplements. You can do ginger shots if you’re brave.

Dr. Emily Kostelnik: (42:45)

Yes. I started looking into it when I saw a study that showed that it performed as well as Claritin for seasonal allergies. And I was like, “I’ve got to get on that!”

Dr. Becky Campbell: (42:59)

Yes, because it’s not going to reduce the DAO enzyme, which breaks histamine down, the way that antihistamines can [over the] long term. And then we’re just saying you’ve got to do what you’ve got to do, obviously. But if there are more natural ways, like ginger and quercetin, or even perilla seed extract… [There are] different things you can do: Resveratrol, certain anti-inflammatory… What about boswellia or curcumin? Did any of those work for you?

Dr. Emily Kostelnik: (43:32)

Yes. I personally haven’t done well tolerating the more heavy-hitting mast cell stabilizing types, like quercetin and resveratrol, or the ones that you’re listing. 

Dr. Becky Campbell: (43:43)

You may have an issue with your COMT gene. Do you know if you do?

Dr. Emily Kostelnik: (43:48)

I have not been tested for that, but I have looked into it a little bit.

Dr. Becky Campbell: (43:53)

Yes. We’ve seen that in practice. On the DUTCH test, it shows you the activity of that gene. We try not to give people quercetin if the activity of the gene is slow because it can slow it even more.

Dr. Emily Kostelnik: (44:06)

Interesting. Got it. And I was just trying to think of other natural things. Sleep is hugely important, like circadian rhythm regulation. Getting morning sunlight can be really important. There is some research that shows that vestibular disorders can lead to insomnia, and then insomnia makes the dizziness and anxiety worse, so that cycle begins again. [There are] some supports around sleep, like getting exercise at the right times and not having caffeine too late in the day, although caffeine is a trigger for a lot of people. A lot of people just avoid it altogether. The same [is true] with alcohol. Melatonin can be helpful for some people. Relaxation exercises before bed. I personally love binaural beats, like delta waves, before bed. Sleep is hugely important. I also screen everyone for sleep apnea because hypoxia, or a lack of oxygen during the night, can actually damage the inner ear. So we want to be really sensitive to that too. I’m trying to think of any other natural treatments. I know we talked a little bit about this: Social support and how important that is, and feeling like you have a community. And I’m sure you’ve seen, especially with mold, Lyme, and all these things, that there can be support groups online that are actually quite anxiety-provoking for people.

Dr. Becky Campbell: (45:37)

Oh my gosh. I’ve noticed that with the Lyme community, the Facebook groups, and stuff, I feel like it’s focusing a lot on… Let’s say you’re feeling good today, and you go in and read a post about how horrible someone’s feeling. It’s not that it’s wrong for anyone to post that; I just think you should be aware of how those things make you feel when you read them. And note that if you felt good before you read it and then you started to not feel well, maybe that type of information isn’t good for you. 

Dr. Emily Kostelnik: (46:18)

Yes, that. And even from a neuroplasticity perspective, where we put our attention is really important. So when we’re Googling all day and we’re in these groups all day, it’s telling our brains, like, “This dizziness is super important, and I should make those pathways even stronger,” rather than focusing on the things that bring us joy and steadiness and all those things. So it’s complicated. It takes a lot of repetition, but I just kind of want to instill hope in people: You can make leaps and bounds and not feel dizzy all the time, and there are so many different options for things that you can try.

Dr. Becky Campbell: (46:58)

Yes. Well, for those listening who are kind of resonating with this, I think that starting with diet and trying to reduce inflammation is huge. Maybe working with a functional medicine practitioner to kind of dig in and do some testing. Working with somebody like you to manage the emotional aspect, the nervous system, and all that stuff is really, really important. Working with the physical therapist and then maybe someone else, like a neurologist, can be really helpful.

Dr. Emily Kostelnik: (47:35)

Do you have any tips—because I get asked this daily too—on how to find the right type of functional medicine doctor? That’s probably a really hard question.

Dr. Becky Campbell: (47:45)

I would say a lot of us are virtual. So I see people all over the world. I have patients in Australia, the UK—everywhere. So what people say a lot is that they don’t have anyone by them in their area. But there are so many people online now. So what I would recommend is that you look at everything that they have and see if they really know what they’re talking about, because a lot of people who are specialists in functional medicine these days may not even have training. So you just need to be careful. You need to make sure they’ve been working with people, they’ve worked with a lot of people, and they know what they’re doing. A lot of the time, it’s good if they’ve had something themselves because they really can sympathize with how you feel and understand what you’re going through. But online. Go on Instagram and #functionalmedicine. You’ll see a lot of people using that. Or… I don’t know.

Dr. Emily Kostelnik: (48:59)

I just ask because, in my journey, it took me a while to find the right functional provider that focused on the histamine issues because a lot of them don’t. So I didn’t know if there was something specific to look for, but it seems like you just have to kind of wade through what they talk about and if they have content and [consider] what they’re talking about.

Dr. Becky Campbell: (49:25)

And if they’re going to look for the ‘why’… That’s the real purpose of functional medicine—finding out the why of everything. Put any symptom, syndrome, or anything [else] in there—you want to know why. And the only way to know that is to do testing. So that’s the most important, and not everybody can afford testing. So yes, we do offer other things like books, programs, and stuff to help you get as far as we can without doing testing. But if you can afford testing, you definitely want to work with someone who is going to look for the root of your issue and then give you a protocol based on what they find in the testing, not just give you a bunch of supplements out of the gate based on what you’re telling them because so many things overlap. You don’t always want to just take a bunch of stuff because they’re symptom-based products. 

Dr. Emily Kostelnik: (50:21)

Right. Yes, that makes total sense.

Dr. Becky Campbell: (50:23)

Yes.

Dr. Emily Kostelnik: (50:24)

Yes.

Dr. Becky Campbell: (50:25)

Well, thank you so much for coming on and spreading awareness about what this is. And especially post-COVID, we’re seeing so many people with—

Dr. Emily Kostelnik: (50:35)

I didn’t even think to talk about that, but I’ve seen so many people diagnosed with vestibular migraine, PPPD, or even vestibular neuritis, [not only] post-COVID but also post-vaccine.

Dr. Becky Campbell: (50:48)

Yes.

Dr. Emily Kostelnik: (50:49)

So I think the awareness piece is really important. And we know that with long COVID, there’s more talk about the mast cell involvement in that, so it’s getting a lot more attention. I mean, obviously, long COVID is not good, but getting more awareness around the mast cell relationship is really important.

Dr. Becky Campbell: (51:11)

My practice is about 50% post-COVID or post-vaccine right now.

Dr. Emily Kostelnik: (51:17)

Oh wow! That’s massive!

Dr. Becky Campbell: (51:20)

Who had nothing—no histamine issues that they knew of before—and now they’re having all these symptoms and they have no idea why. It’s crazy how many people we see with that. And sometimes I’ll find that they did have an issue, but they just didn’t realize it, and it was really more triggered by having COVID or getting a vaccine and having a poor reaction to it. But yes, we’re working with so many people that that is their story. And it’s hard because they felt so good before.

Dr. Emily Kostelnik: (51:55)

Yes.

Dr. Becky Campbell: (51:57)

Well, thank you so much for coming on. So where can people find you?

Dr. Emily Kostelnik: (52:02)

I’m most active on Instagram at @RootedBehavioralEducation. That’s where I provide the educational content. I do have a private practice that’s @thevestibularpsychologist, where I work one-on-one with people. But I’m only licensed in certain US states, so that’s a bit more limited. Whereas with the education piece, I have some courses, I host content, I do questions every week, and everything. So I’m happy to welcome anyone to the community, and I love talking about this stuff. It’s so important, and I love providing hope that recovery improvement. And all of these things are really possible.

Dr. Becky Campbell: (52:41)

Yes. They really are. You just have to have the right guidance, and they really are. Well, thanks again. We hope that you enjoyed the show, everybody. 

Dr. Becky Campbell: (52:48)

Thank you, guys, so much for listening to this episode. And if you love this episode, please leave a review. It only takes a couple of minutes. And you can find out more about us at drbeckycampbell.com. And you can follow us over on Instagram at @HealthBabesPodcast, @DrBeckyCampbell, and @DrKrystalHohn. Have an amazing day!

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