The Medical Detectives - Kathy's Story: The Case of Mysterious Double Vision

Episode Date: January 15, 2025

In this shocking episode of The Medical Detectives, Dr. Erin Nance and Anna O’Brien sit down with Kathy to unravel a years-long medical mystery that took her from a diagnosis of ADHD in childhood to a harrowing journey through depression, bipolar disorder, and physical debilitation. Kathy shares her story of navigating a healthcare maze, encountering medical bias, and her relentless pursuit of answers despite feeling dismissed by numerous specialists.Through trial, error, and her own determination, Kathy finally uncovers the surprising culprit behind her debilitating symptoms and rediscovers her sense of self. This episode offers an emotional exploration of resilience, the pitfalls of fragmented care, and the importance of advocating for yourself in the face of uncertainty. Join us for a heartfelt conversation that inspires hope and empowers listeners to keep fighting for their health and well-being.If you have a medical mystery story that you would like to be featured on the show, please email us at [e-mail]4o

Welcome back to another episode of the Medical Detectives podcast. My name is Anna O'Brien, and I am here with the always lovely and very informative Dr. Erin Nance. How are you doing, Dr. Nance? Hi, Anna. I'm doing great. I'm so excited off of the heels of our last episode and all of the wonderful things that you shared with everyone. It was just so amazing to get to know you on a personal level and hear your health story, which I know is going to help so many people. And you know what? It was nice to be the first because I kind of like ripped the bandaid off, and showed people that it's not that scary to talk about health, which is actually why we're doing this podcast.

And this week's kind of cool because following off, you know, last week's episode, which definitely talked a lot about weight stigma, this week's episode is actually going to talk about a type of stigma that's just as pervasive, which is mental health. We all know that your mental health is part of your overall physical health, but sometimes it feels like that can color the interactions that you have with your doctors. Yeah. I think it's an easy thing to see on a medical record and just say like, oh, is this person trustworthy? Which is like hard to say, but it's what happens, right? The doctors look on the thing and they say, oh, she's just bipolar. I think anyone who has struggled with mental health issues,

which I honestly have as part of my journey, can sometimes feel like those come at the forefront of your experience rather than just like a different shade of color. So I think this story is really great because it really is going to introduce us to just how detrimental that can be when people don't listen to you because they see information on your record about your mental health. And it's about the power that mental health labels sometimes have in a negative way when interacting with your medical team. Absolutely. I think labels are a beautiful thing because they help us understand like common characteristics.

But at the end of the day, sometimes they are the very thing that keeps us from getting treated. So with that, I think it's time to just jump right into the story. Hi, Kathy. Thank you so much for joining us on The Medical Detectives. I'm Dr. Erin Nance. My name is Anna O'Brien and I'm here just to hear you out. I'm Dr. Erin Nance. My name's Anna O'Brien, and I'm here just to hear you out. I'm excited because I love a good mystery, any good mystery I'm in. I'm so happy to be here, you guys. I'm excited to tell my story, and I'm hoping by telling it, maybe it will help somebody out there. I can guarantee it'll help somebody out there. Well, Kathy, can you take us back to a point in time when you are little Kathy and what it was like kind of growing up?

Sure. Well, we do really have to go back to the beginning to understand how this medical mystery came to be. Because the mystery doesn't start until I'm in my 50s. But the reason I didn't get a diagnosis really starts when I was just a kid. So starting out with little, little Kathy, little Kathy, at two years old, was diagnosed with ADHD, which, which back then, way back in the way back machine was for girls was not diagnosed, but I had pretty severe inattention and impulsivity also hyperactivity. So. Can I ask a quick question? Cause I'm genuinely curious. Is two years old an age that you can

diagnose ADHD? Because like, in my mind, that's something that you would have to be like a little older. But you know, I don't know. I'm not a doctor, but you are a doctor, Nan. So please tell us a bit. Yeah, I don't. I don't think it was not normal to be diagnosed. And I think maybe that might help with just how severe, um, my, uh, very precocious I could, you know, speak like full sentences at nine months. So I had really these incredible verbal capabilities, but then on the other spectrum, I was all over the place. Couldn't sleep. They would find me in the neighbor's yard behind sofas. I was all over the place. So were you like hiding or like just run away or? Curious, very curious and very, mind sort of never shut off. There was no off switch, never took naps, just was just constantly going and my my parents did not want to medicate me you know the

the treatment of speed so they just didn't they didn't want to treat me so eventually though I learned how to kind of reign it all in and really for the rest of my life, all the way through school, it was mostly that, oh, she's really bright, and she has so much potential. She just isn't reaching her potential. You know, you're very animated, and you're very articulate, and you understand what's going on in the world, but you can't do math, you know? So that was my ADHD. And as an adult, I became an entrepreneur. I own my own company, ran my own business with, you know, 35 employees. It was very high energy, high stress. So that's what I did. And I, you know, got married and I had my kids and about a year, so not immediately after I had my second child, but about a year after she was born, I started to get very depressed, hopelessly depressed.

I couldn't function kind of depressed. My business was suffering. I wasn't as good of a mom. And I eventually went and saw a psychiatrist. And he said, well, you have ADHD and you have depression. And so he gave me the typical sort of Prozac and Adderall. So for the first time in my life, I was given those two drugs and I took them and I continued just to get more anxious. And so then he added in the classic Xanax. So I had the uppers and then in the afternoon when things would get just too bad, then the downers, you know, so, and that's the way it went. It just went that way. Taffy, can you describe what it felt like to go from someone who was really running on all

cylinders, having children, running businesses to all of a sudden feeling this new feeling of, of depression? And what, what was that like for you? It was otherworldly. I mean, I, I just, I felt like I wasn't myself. And I know that's such a cliche term to you. I'm just not myself, but it's such a weird feeling to be a functioning human being and then go to not being able to do anything. It's isolating. And it got to the point where I used to think, if I could just maybe drive my car off an embankment, not to the point where I would kill myself, but just so that somebody would put me in the hospital

and just let me check out of my life for a few days, just something to just like a reset. I just needed a reset. Um, I have, I have felt that way before and it is, it is a dark place. It's like, you're not, you don't, you don't want to take that step that's final, but yeah, you just want to be alone for a little bit. Yeah. Yeah. Or not be responsible. Yeah. You don't know to take that step that's final, but you just want to be alone for a little bit. Yeah. You don't know what you want. You just know that you want to get out of the pain that you're feeling right then. And so that really freaked me out. And I decided to check myself into a hospital. So I checked myself in inpatient and that's when they diagnosed me with bipolar disorder. And I thought that that was so bizarre.

The whole sort of inciting incident, I guess, is I stayed up all night doing one of those like scrapbooking things where you're scrapbooking with your friends and you're stayed up all night doing one of those like scrapbooking things where you're scrapbooking with your friends and you're staying up all night and then you go home to your family kids and try to continue on with the day. Yeah. A bad idea when you're in a mental health crisis to do that. And then they sort of thought, well, we think maybe you were, you were on an upper and you were on a pretty high dose of Prozac. Both of those push you into what could be like a hypomanic phase. And then after the hypomanic or, or a manic phase, you crash. And that's the, that's the scary part of having bipolar depression. And they said I had bipolar two and I kind of was devastated

because, you know, I knew, I just knew that that was like a diagnosis that I just didn't want to carry with me. I knew people that had bipolar disorder and I just knew that, you know, bipolar one is the more classic. What's the difference between one and two? Because I honestly don't know.

Yeah. From my knowledge as a lay person, I'll tell you what I think. Love it. Maybe Dr. Nance wants to say something else. But my understanding when I was going through this was that bipolar one was the classic manifestation where you had manic phases that were accompanied by sort of not maybe not delusional thinking, but maybe inflated sort of ego, grandiose, grandiose thoughts, and like going out and spending a ton of money or like just jumping on a plane and

flying to Japan without telling anybody. But the bipolar two is this hypomanic phase where you're get a lot done. You're really excited. You have lots of ideas. Maybe you pick up a crafting project here and there and everywhere. And you know, things are, are a little chaotic in your life and maybe you don't sleep or you have a hard time sleeping and then it's the crash. And I don't, I don't know. I don't know, Dr. Nance, is there a difference between like, uh, the, on the crash part, the depression part, is it different in bipolar one and bipolar two? I can't remember. I don't know if there's any other- From what I recall, it really is more the mania portion. So bipolar, meaning between two states, the mania and the depression, and exactly what you were talking about, those

classic symptoms. And it's always the gambling. They always talk about the people who they gamble huge sums of money. These are the people who are staying awake for three days in a row in Las Vegas. And it's very impulsive. That's really the level of the mania. And that's typically what we think of the bipolar one. And it's correct. The bipolar two is it's not at that level. But the depression part, everyone experiences their depression differently. But the point of bipolar, it's this pendulum between the two states. And it's usually preceded by the mania. And then you go into the depression.

So like one is more extreme pendulum shifts, potentially, than two in a very basic, basic way that probably does not cover everything. Yeah. I think that's the way, I think that's where I understand it. Yeah. And I always had, you know, when I'm sitting there and they're giving me this diagnosis, they didn't specify I had one or two. They just said I had bipolar disorder. And so I'm sitting there going, wait a minute. Wait a minute. You know, I haven't, I don't do any of those things. You know, I'm scrapbooking. I stayed up all night scrapbooking.

Not gambling. You crazy girl, you. Did you tell them you were doing extreme scrapbooking? Was it like parkour and scrapbooking at the same time it was a little okay maybe it was a little hardcore but you know everybody else left the scrapbooking thing that we did and they were all fine but I wasn't and so lessons. And so I go on with my life. They put me on lithium, which is a very common drug. And then they also gave me Lamictal, which is an anti-seizure medication that they use for people with bipolar depression. They use it for mood stabilization. And I lived like that for a long time, you know, you know, ups and downs, but

nothing extreme, nothing crazy, you know, was able to continue to work and raise my family. And then my kids all left home. And, and then I hit a, another really super depression. Um, and yeah. Can I ask a quick question? So during that time when you were taking these medications, when there was that big shift, did you feel okay? Or did you just feel alive? Because I guess what I'm trying to understand is like, were you present in your life or did you feel okay? Or did you just feel alive? Because I guess what I'm trying to understand is like, were you present in your life? Or did you feel like the medication just made you because I've heard other people say that they sometimes get numb from these medications. So it's like, where do you think those were? Do you think they were working for you? Or do

you think they were just like making life tolerable? I, I actually think they were working for me. And I really feel like yes, at the beginning, I felt like they dull working for me and I really feel like yes at the beginning I felt like they dulled me quite a bit but I felt after I'd been on them for about five years which is a long time you know that was my new normal and I still was creative and did fun things and had a lot of, had joy and enjoyed my kids and enjoyed my family, enjoyed my life. So it felt like a solution. Yeah, it did. You felt happy with it. And that's when you start to say, okay, well maybe, maybe that is,

maybe that is what I have. Right. So. And now it's managed and I can live life normally. Everything seems fine going along and trucking along through life. And then my kids leave. And I just, I knew the transition was going to be hard. I just didn't know it was going to be that hard. And it, again, it was debilitating. So, you know, my doctor, he tried to mess around a little bit with dosages here and there and then he switched me to a different medication and COVID happened my mother-in-law got very sick I had to move her and her husband across the country during COVID to so that we could take care of them and eventually not long after we got her home,

she took a turn for the worse and then was put on hospice and had a very hard, like three months where I, as her caregiver, you know, I mean, it was emotional and it was physically exhausting. It was mentally exhausting, dealing with end of life issues, especially with somebody who doesn't want to die and hasn't come to terms with that in their heart.

So that just, like, tears you apart inside to watch that. So I kept myself busy, though, took care of her. You know, she passed away. And then I just threw myself into, you know, projects like outdoor projects and working on the yard and just trying to keep my mind busy while still feeling this horrible sort of depression inside of me. And I got to the point, I went back to my doctor. I said, something's got to give. I mean, this is just not letting up. And so he upped my Lamictal.

And then, you know, once when you're on psychiatric medications, it's really like a chemistry game. And you have to take one medication and then you have to wait you make a change and then you wait so that would drive me nuts you've waited you know two or three months trying to see if it's going to work and then you make you can't just make a bunch of changes because then you don't know what's the what's good and what's not good what you what you need to take and what you need to cut out so he started fiddling with things adding things and the things started to increase in i don't quite know how to say it but they started to get the drugs kept getting stronger too so like you know they put on like um they then they kind of start a different type of job.

Yeah. Then they start to try atypical antipsychotics, right? So now you've got the big guns, right? And those will just knock you out and make you blunt you and make you just flat. But they did up my Lamictal and that did seem to help a little bit. But then my symptoms started to get very weird. I started to get dizzy. And not just the kind of dizzy, like dizzy so, I hate dizzy because dizzy is so hard to describe.

Dizzy like the room spinning? No. Dizzy like you were having a head rush or, you know, that kind of thing? No. What about like when you twirl in a circle like a whole bunch of times and then like you can't walk after it? Actually, actually, you're right. It was, it was more of that kind of dizzy. Like your head wasn't, your head didn't, my brain didn't know where my body was. Yeah. So I'm like going up the stairs. I'm missing step. If the lights are off, I noticed I couldn't, I didn't know where I was.

Like I couldn't like, you know how you can turn the light off in your kitchen and get to the stairs? You know, you kind of just know the way. And I would be like on the other side of the room. I'm like, wait a minute, what's happening? And I was get to the top of the steps. And it was like I had run a marathon. I was tasked with trying to clear an entire like one acre piece of property of blackberries and vines so that I could get my mother-in-law house put onto the market. And I left doing that over a two-day period incredibly dizzy, incredibly lightheaded, feeling very sick, just not myself at all. But I had put in a lot of physical labor that day more than I normally do. And so I thought, you know, this is just what a hard day's labor is going to feel like for you.

And you're just not the same age anymore. You just need to get it together and you'll have a couple of days of rest and then you'll just hit the ground running again. But I never felt very good after that. I was dizzy. My muscles hurt. My balance was off, which was weird because all of a sudden I just couldn't balance the same way that I used to. I just sort of felt awful. But I attributed it, I kept thinking it was the, it's, it was the blackberry vine. I just was lethargic and depressed.

So, you know, when you're lethargic and you're depressed, I mean, that's, those two kind of go hand in hand, but it continued to get worse. It continued to get worse. And my, my psychiatrist said, I really want you to see a neurologist. I think you need to see a neurologist. So I said, okay, I'm going to go see a neurologist. The neurologist, Finally, you know, how long it takes to get into any kind of specialist, right? So finally, I get into see a neurologist, and he, you know, watches me walk and does the neuro exam. And, you know, he's going through all the things. And he's like, Yeah, I don't, you know, you look, everything looks good. Everything looks fine. But maybe you should try some physical therapy, like some balance training.

And so we'll get you in to see a physical therapist. So I get in to see the physical therapist and they... Wait, wait, hold on. So I'm just trying to process this. My brain does not like this. Yes, I'm sorry. You are dizzy. You are dizzy and you can't see things. And they're like, physical therapy will solve it. I'm sorry.

That's not acceptable. Anyway, continue. No, thank you. Because that does bring me back to when you have a bipolar diagnosis and you're taking the kind of medications that I am taking, including, oh, yeah, well, I have a little bit of an antipsychotic, you know, that I take. The doctors are looking at you. Now, I can't, I'm not a doctor, Dr. Nance, but they, I think they try to create a picture in their head. Oh yes, yes, yes, yes. You know, this person is, you know, this person has depression, you know, she's anxious.

She's gone through a lot of things in her life. You know, this is just in her head. And I will say, Kathy, that when we are in medical school, the way that we diagnose someone is through pattern recognition. Right. So you have a six-year-old male. He's coming in with chest pain, clutching his chest, having shortness of breath. We're worried about heart attack. For women, it's a six-year-old woman. She's coming in with dizziness and

lightheadedness. She's having a panic attack, right? We are categorizing people based on what is the most likely cause. But something that we are all taught to do, but don't necessarily do all the time, is think of a differential diagnosis. So you may have the one diagnosis that's screaming in your face, this is what it is, but it's not always that. And sometimes the smaller clues are what you have to pick up on and realize there could be other patterns that exist. They may not, you know, be the blaring one, but a lot of times those symptoms are very nuanced. And even your description of not being able to turn out, you know, like the light, it reminds me of, there is a sense, you know, we have our sight, our smell, our hearing,

but proprioception is a sense, which is how we interact with things in a 3D manner, right? How can I put my hair up in a ponytail without looking at it, but still know that I can put my hair up in a ponytail? How can I make sure that as I take a step, I don't have to look down to take a step. I just know how to take a step down the stairs. And so I'm curious because that's, you know, what I was listening to you describe your symptoms. That's really what I picked up on was that there was an issue with that sense. But I'm curious if that was brought up at this stage

I'm just I'm all in now please tell me more I'm nodding my head like crazily because I'm like yes and that's so hard to to as as a person who maybe has never had that happen to them before it's so hard to explain you, that I didn't even know that was a thing. I actually didn't know what it was called, but proprioception, proprioception, word of the day, proprioception. Yeah. So that was all off. Real off. But you know, every time I would go to a new doctor, a specialist or something like that I would be like you know how do I come across as a credible human here so that they listen to my symptoms and not look at the look at the picture that's in front of them, like close their eyes and don't look at the chart. And you know what I mean? How do I, how do I do that? And I, I honestly, I still don't know how to do that. And so I,

I, I continued on. Um, I, you know, I'm mad for you. I'm mad for you right now. How dare they treat you like that? She is indignant. She's indignant. So I went to physical therapy. You know, they had me try to stand on one foot. I couldn't stand on one foot. Like, not even for a second.

Did you just, like, fall over? Yeah, I would just fall over. Just, phew, timber. I mean, that just was so weird and they were like yeah that is kind of weird that is kind of weird meanwhile yeah it's weird meanwhile i start having pain in my shoulder on the side of my neck and it's so awful and then going down my back and then i started getting that like that sciatic like that pain that goes down the back of your leg and you know they're like oh you're just tense you're so stressed and we're gonna do some massage on you we're gonna put like little

you know 10 like a little unit that like a biofeedback yeah of, yeah, like a TEMS machine. And so I just keep doing all the things. I have one question. Where you were starting to get pain up here, like in the shoulders, was it the same place that it had hurt like earlier on? Remember you were telling us during your last depressive episode that you kind of had had a lot of body pains? Was it the same exact locations or like a little bit different? Yeah, it kind of was.

It kind of was. I didn't really put those two together though until much later, but that's really a good kind of catch. I'm trying to be a detective here. I don't know anything. So I'm like, maybe I can figure it out with limited medical knowledge. That's a really good question. So I'm still complaining, right right so the neurologist says maybe you need to go see infectious disease because you were clearing a lot of brush and doing a lot of yard work and maybe something in that whole thing you know is causing this problem so I'm scared of the outdoors

infectious disease you know they tested me for Lyme and for the whole battery that they could test you for, for, you know, any kind of crazy thing that could be in the soil or in dust or anything that could be making these symptoms. They tested me for it. And of course, everything comes back negative. And you know that feeling like where you just even if it's horrible like even if it's it's the worst news ever like oh we're really sorry Kathy you have cancer you would just be like oh thank god I could stop you know I can at least I know at least I can name it and that's so so horrible. But when you're so desperate, that's the, that's how desperate you become when you don't know what's wrong with you. You just get desperate. Please just tell me I have something because you begin to feel like maybe I am crazy.

I mean, maybe I'm freaking crazy. I've lost my freaking mind, right? And the unknowing part is what causes anxiety. And so when you present to a doctor, you present as an anxious person, but that doesn't mean you necessarily have anxiety disorder. But sometimes people cannot understand the difference. And I think that what we need to be looking at, you know, certainly in the medical field, is the mental toll that the diagnosis journey takes on our patients, whether it is from the never-ending cycle of seeing people and not getting results or being put on, you know, treatments that make you actually feel worse than, you know, than it's supposed to be making you feel better. And that is inflicting a lot of mental anguish

on our patients. Thank you. Preach. Thank you for, yeah, you're so right. It really does. It really, it really is a mind. Excuse my language. It's the mind fucks, you know, I don't think there's any other phrase that fits it. Right. Yeah. So I'm in the ID doctor. I'm telling him, you know, that I'm in physical therapy and nothing is helping me. And they sort of just like, well, maybe you should go to your primary care. You know, they sort of just like, you know, not they, I don't mean they as an all doctors. I just mean, when you don't, when you are a doctor, and I think you don't know what to say to somebody, you kind of just kick the can a little bit down the road. Like, oh, maybe she could go and maybe they can help her or something. So I went to go visit my son and I got onto the plane and I've taken this trip, you know, hundreds and hundreds of times over the last few decades. And I could not sit still on the airplane. My leg and my hip hurt so bad. I was sweating. I was in the window seat. I had to try to arrange to get up and kind of walk around. I could not get the pain out of my hip. And it just continued to happen. Every time I'd get in the car and take a long trip. My leg was just on fire.

And doctors thought it was some sort of pinched nerve or sciatica kind of problem with my sciatic nerve. I'd never had that problem before, although I knew people that it had happened to, and it kind of seemed similar to what they were talking about, but it came on out of nowhere and it was unbelievably painful. So I went to go see my son and you could barely get off the airplane. My leg was just killing me. My body is killing me. And I had noticed also that my vision was getting kind of, you know, when I was watching the TV, things were not focusing very well. When I was driving at night, I was kind of having a hard time driving. And, you know, I've had glasses, you know, since I was in high school.

So I happened to walk on, you know, down the street, cute glasses in the window, such cute glasses. I'm like, Oh, I really want those. Those are adorable. Like those are so trendy and cute. And I just love them. I went in, I said, I need a new prescription. And they're like, you can see the optometrist. So I see the optometrist and she's going through all the testing and everything. And she says, wait a um did has anybody ever told you you have double vision and I said no never and she says you know oh do you have a I see you have ADHD and I'm like yeah I have ADHD and she says nobody's ever told you about it? Nope. She's like, I really want you to see our specialist because he's a neuro-optometrist and he specializes in BVD. Which BVD and ADHD mimic each other in their symptoms. So if you have brain fog, you get headaches, you

are inattentive, you are impulsive. So a lot of the same things that you have when you have ADHD, you can get having this. And it's, it's basically because your, your eyes don't quite line up either vertically, like line up this vertically or horizontally, one of the two. So she said, you're walking around just like, not like straight ahead. You're walking with your head slightly to the left. And every time we talked, you slightly turn your head to the left. And I was like, oh, well, that was, that's really interesting. And like, she was really watching my body. And so I met with the, with the doctor and he. As I correct my head.

We all turn our head to the side. I'm seriously sitting here being like, I've never noticed if somebody's head tilts one way or another. I'm not observational. Well, you sometimes do that when you're paying attention to somebody. You know, you're like, let's see if you turn your head. But she said it's like just like all the time. Askew. It's just slightly askew.

Shout out to that woman for paying attention because I would have never noticed that. I know. And also like, okay, one question of clarity because I don't fully understand. What does double vision mean? Is that the tilt or does it mean you see like literally double? Because in my mind, you see the world twice. It is like if you saw lines and it was one line you would see two lines oh so it's kind of like like you know how um when you see like things in 3d without the glasses and the lines are just like slightly

off and then when you put on the glasses they're like they can't everything comes together yes but what your brain is so amazing right because apparently when they did the testing on me, he said that my vision would be double and then I would smash it. I would smash the line and it would become single. You're a superhero. My eyes were working like double time. All the muscles in my eyes were working double time to make it. So it wasn't double vision. So the human body is so cool. It's so cool. Like the fact that your body did this, like shout out to your body. I know he's like, you've probably had this for a really long, long time because you're really good at smashing this image back. You know, you just really, it's really like nanoseconds, you so um the the correction for this is prisms in your glasses

wait and so they did the testing and he's like yeah you kind of have one of the strongest prisms that i've seen ever like this is pretty strong he said but this should help your dizziness and I put those glasses on and oh my god I cried I just cried I I could everything was so clear and I wasn't as dizzy and so I went home they said also because you turn your head a little bit you know like you're turning your head a little bit to focus on things it's creating a misalignment in your spine and so no way so you're you're that's why your whole like side of your body is feeling a little bit off or you're having pains on your muscles and stuff because you're not quite you're not quite walking around like with a straight back. You're kind of like, so it wasn't anxiety. It was the fact that your eyes were trying to just see normal.

Yeah, it was, it was weird. It was so weird, but I was so hopeful and so happy. I got these glasses. I go home, I get off the plane. I'm feeling really good. My leg doesn't hurt as bad. You know, I get home and I, you know, I'm walking up the stairs and I'm exhausted. And I'm like, well, that didn't stop.

And things were better, like a little bit, but I was still, I still couldn't stand up on one foot. I still couldn't close my eyes and know where I was in space. And I was still having fogginess and just sort of not with it, not altogether there. So that wasn't it. I mean, at least as far as we know at this point, that's not it. It wasn't it. And I said, well, maybe it's just like I needed the I noticed that

I was not able like I I did this about for about three months and then I went I flew back to him because I mean I had to get on a plane like can you imagine I mean the cost was like oh wait so this this guy's not even here it It's like by your son, right? I just happened to be at, I mean, it was complete kismet that I had run into him. That I walked in of all the places in the whole, you know, there's not a lot of these people around that specialize in this. So I went back to him and he said, yeah, your prescription has gotten worse. What? he said yeah your prescription has gotten worse what um worse to the point where it's not just a little worse like we need to change your prescription and these these glasses with these with these prisms and i don't have like my like vision insurance so i mean it was their

how long has how long have you had the glasses for before you had to go get new ones? I want to say it was between like three and five months. Whoa. Yeah. That's wild. Right? But that rapid change in vision, what did the neuro-ophthalmologist say about that? He was the only one that put me on to my next thing to try, which was, he said, I am wondering if you actually have

something wrong with your ears. Like there's like this tiniest, tiniest bones in your body or in your ears. And these little bones can get a crack on them and it can cause you a lot of like vertigo kind of stuff or can cause all kinds of weird stuff. So I thought, well, you know, I guess that's my next thing to try is I'm going to go look for that. So in between this time, in between getting the glasses and getting the next set of glasses, I had set up an appointment with a, at a major university with a neuro-ophthalmologist, um, because this last doctor was a neuro-optometrist. And so my other doctors thought a neuro-ophthalmologist might know

what's going on. I called the office, I made an appointment and it was for, oh gosh, it was several months. It was a few months. It took me to get the appointment. So I waited the several months and then I actually made a trip to go and had to get on the plane again and schlep all the way there. And once I was there, I was in their office. And when I got there and I was in the waiting room and I'm in this big university and I feel like, okay, I'm finally going to get into the right place. And they're going to be able to tell me what's going on with me, what's going on with my eyes, what's going on with my balance. Why is this happening? I'm going to get answers because these are the people that you go to. And I went into the exam

room. I was very hopeful. And he looked at me for a few minutes and said, I'm sorry, I can't help you. And I opened my mouth to say something like, I came all this way. I've waited so long for this appointment. I wanted to say that out loud. And I was so, it was so like I just fawned. I just fawned in that moment. Because I had built everything up in my head that he would be able to fix me. Or at least tell me what was going on.

Because sometimes you just want to know what's wrong with me if you just had a reason of why things were the way they are maybe you could cope with it better and so I just sat there with my mouth open I couldn't speak and I was so angry and I left and I just put it in a box and put it away in my head because it was the most hopeless feeling to be with somebody that could help you. And they just looked at you and said there's nothing they could do, and I couldn't tell if it was because of my mental health issues or the medications that I was on or all the doctors that I had seen. I couldn't tell what it was. I couldn't tell if it was me. It's kind of like he just looked at me

and said, I can't help you. And I just, you never think that you're going to be in a situation like that when you're a strong, capable person that you'll be able to stand up for yourself and say, wait a minute, will you please come back and explain yourself to me? I have come all this way, and I just need an explanation. And you think in that moment that you're going to be able to stand up and say that, and I couldn't. I was shocked. I think I was, I've been through so much, and you get to a point where you're so beaten down. You're so beaten down. And you question yourself. Like, is this in my head? Am I? Is this all in my head? Have I completely made this all up?

So I left there and I was just devastated. And my depression just took on a whole life of its own. Because was there any other pathway for, you know, at that time, did you feel like there was any other pathway? The ear, the ear thing was the next step to go to. And so, and I was going to do that, definitely. But, you know, I hadn't even like it was I had to find the person you know because this doctor that I saw that told me to go to him you know he's in a completely different he's out of state so I can't go I can't go see I gotta find somebody kind of where I am you know it's a whole process so we live in a real rural area, like way out in the boonies. Can't see your neighbors

kind of thing. And I'm, you know, walking around the house and I was doing some, not remodeling, but I had, I'd gotten some stuff out of some boxes. I had about five or six big boxes and I, I was moving them around and I had to go and answer the phone. I went to go grab my phone and I moved the boxes at the same time with my foot. And I went backwards, like just timber backwards. And as I was falling backwards, I knew that I was not in a good place. I knew there was a piece of low furniture behind me but I didn't know where I would hit that but you have like so many things happen like right in that that split second where something bad is you know something oh this is going to be bad

um and you know that you're in a bad place and uh sure enough I hit right on the corner of this low cabinet. It was like a TV cabinet. And I knew immediately I had done something very bad. It hit me square in the spine. And luckily, I had been going to grab my cell phone so it was right there I had to call nobody's around like there's there's nobody around yeah you know I can't like call a neighbor there I can't I'm so I call 9-1-1 and the fire department comes I can't even let them you know I don't even know if the door is unlocked.

Thank God it was unlocked. I didn't know how they were going to get in. I couldn't move. Like I was, I was, I was down. They get me on a gurney, take me to the hospital. Never had an ambulance ride before. So that was, was crazy. Get to the hospital.

And I did, I had broken my spine, um a vertebra oh my gosh I cracked it luckily just the side of it but I had also done a lot of trauma to the tissue in my back so I thought gosh you know I'm not I'm not making this up you you guys, you know? Yeah. It's like, you can't win. I'm not, how can you, how can you, how can your mind make you lose balance and you break your back? Just moving a box with your foot, just picking your foot up off the ground and moving a box and you go over backwards. Um, so I'm curious, Kathy, at this point, because you are presenting to the hospital for the back problem, right? The broken back. But did anyone pay attention to why you broke the back in the first place?

No. Of course not. No. They looked at my medications, I think. And they said, yeah, well, I don't know. which is so fun. It's way more fun than I thought it would be, which is weird. I'm not delighting in your trauma. I'm just saying it's fascinating where we've gone on this journey so far and we're not even there yet. And I think that's like how many specialists have you seen at this point? You've seen a psychiatrist, you've seen an eye doctor, you've seen, oh, you're going to see an ear doctor. You're obviously now seeing a back doctor, right? You've

seen a neurologist. Yeah. Like what's five people have seen you and all of them are like, no, no. Yep. Yep. So yeah, it, it, I can laugh about it now. So that's good news. Right. Got to find humor in the dark, right? Totally do. I mean, if you can't laugh about it, I mean, so I, I was kind of laid up then and got more depressed and more depressed and more depressed and became suicidal. And that was very scary. But I would, I just felt like I couldn't live this way I just couldn't continue to live this way and I was hopeless I just felt like I'd seen so many people and so many of these really smart people had not been able to figure this out and I just again I just I'm like I'm crazy am I crazy and is this I don't even seeing the word crazy it's just I hate that word I really hate that word but

it's the only description I can think of is there something wrong with my brain I am inventing this is are the is this, like, you know, what do they call it? Dr. Dean, it's like somatic, you know, like psychosomatic. Yeah. Yeah. Like, is this like in your head? You know, my, yeah. And, and the, you know, the other, the other tripod was kind of teetering, You know, when you've been depressed for this long and there's something wrong with you, the people around you start to get a little tired of it. Living with somebody who's chronically ill, you know, it's hard. So having to listen to that all the time just gets really hard when you have an invisible illness. You look fine on the outside.

Why are you so effed up? It's just hard for people's brains, I think, to have to live with that. So when you're so depressed, you can't get onto a reddit or anything to try to get support because you're well actually i'm gonna and then it's like can you trust reddit right right sometimes it's like sometimes is that the best resource i i don't know man i don't know so i i actually did get on i did get on oh okay this gets juicier i did get on red. Oh, okay. This gets juicier. I did get on Reddit. So I'm so depressed. Dr. Nance is like, oh no. She's like, oh God.

Reddit doctors. Google, Google, the Google. So I got on Reddit because I'm depressed. I'm super depressed. What can I do about this depression? And I started reading about ketamine. Okay. And I started looking at the studies and I actually found a clinic in my town, close

to my town that had IV ketamine therapy for treatment resistant depression, which is what they were telling me that I heard. Okay. So I said, I'm going to do it. I'm going to do it. I mean, it sounds like to me as this sort of like, like straight laced or, you know, you know what I mean? But I am like, in my 50s. I'm a mom, never really done anything fun. I was a person who didn't drink till I was 21, because it was illegal. That's how I was kind of that way. You know was like oh you can't do this can't do that yeah so this was a huge kind of leap for me like oh god you know ketamine okay so they said okay well we're gonna get you started but you have to get off of one of your medications because it's um

it it works I don't know if I have this right, Dr. Nance, but it works on the same neuropathways or something, or some channel or something like that. So this drug might cancel out some of the benefits of the ketamine. So I started to get off of my Xanax, which is hard to get off of, but I was very motivated. But the Lamiptol is even harder to get off of because it can cause seizures. It is a seizure medication used for mood stabilization for people that have bipolar depression. And so you have to be very, very careful. You have to be weaned off of it very systematically, very slowly. And I had taken it again for so long, it just didn't, I was ready to get off of it. So they were going to wean me off of Omictal.

And I remember being in my garden and working and worried that I was going to be, I'm going to be like hurting tomorrow. I told myself, but I kept, I kept going because it felt so good just to be outside and in the garden and working. And this is before I did the ketamine. This is just after getting off the Lamictal. And so I just continued to work. And then I went to bed and I woke up the next morning and I didn't feel that bad. And I felt a little sore, but, but kind of a normal amount of sore. So I didn't think very much about it was if the sun was shining, I was excited to get out and do another day. So worked again in the yard, puddled, put it around the house. And, um, and the next day, I felt very sore for two days in the yard, but not that bad. And so I kind of just went on about my life.

A few more days went by, and then I decided I'm going to go do one more day of weeding, which is really hard for me because when I bend over and then I go to stand back up again, that's when I fall over. So it's almost like I have to, you know, gradually get up on my hands and my knees and then put one leg on the ground and then get up on, you know, get three quarters of the way up and then get all the way up before I try to, I can't like get down and stand up. But I always forget, you know, cause you, cause I didn't live my whole life that way. So I would always forget and just kind of go stand straight back up again after bending down and not think a thing of it until I was going over backwards. So I started to weed. I was weeding.

I was making sure that I was taking care of my body. And then about three quarters of the way through it, I was going to get up and answer the phone really quick. I stood up super fast from weeding and I stopped myself about three quarters of the way up. Like I'm going to fall over. I cannot believe I just did that. And I didn't fall and I didn't feel dizzy. And I was, I was dumbfounded. And then every day after that, I just kept noticing more and more and more that I could do things. And then kind of my final thing was I had to leave. And when I go to leave,

I did the cat. I wanted to make sure the cat had a bed, but in order for this bed to be put into the barn, I had to climb up a ladder to secure this bed to this, because it's a barn cat. So I got the ladder out and I said, I'm just, I don't have to go very far up the ladder. So I'm going to stick it right close to this monkey rack, which was like filled with tools. And so I should be able to like hold onto the monkey rack and hold onto the ladder. And I wouldn't fall backwards, which is what had been happening. So I started to climb up there and I, I didn't feel like I was going to fall backwards. I was going really slow and holding on and trying not to lean forward because leaning forward, like when you're going up a ladder,

you're leaning forward. It's that sort of motion that would make me go backwards. So instead of that, because I was holding onto the monkey rack, I was more like up and down. And I was able to get, throw the bed up there and stand on that ladder for a little while and realize that I did not feel like I was going to fall backwards. So I got down and moved the ladder. that was kind of the last major physical thing that I did when I finally thought to myself, this has got to be the medication. This has to be the Lamictal. I mean, what else could make me miraculously feel better? And I couldn't tell if that, okay, I keep thinking, oh, this is just placebo, right? Like I'm motivated and I'm happy and I'm excited about this and my adrenaline is up. And so this is like a placebo effect of having these small wins. And no, I don't think it was the placebo effect because then I was able to, you know,

days and days after until finally I was completely weaned off of the medication and I started the ketamine, that I realized that it was the lomictal this whole time. And that's when I went and I went and gone on all the medical journals, like not on just like the things that you see, like, no, I was going on to Lancet. I was getting into the PubMed journal articles of Lamictal and what are the side effects. And the side effects I had were very rare,

but they are side effects of this medication, of too much of this medication. And it wasn't, and what's strange is it wasn't that much more medication than I had been on for 20 years. It was just that little, little tiny bit more that pushed me over the edge and turned me into a completely different person. At first, I was super excited that I feel cured. But then I had just pure grief that I had spent two years of my life, two whole years of my life, feeling this way. I had lost out on so much.

I had said no to so many things. I had stopped doing things. I had stopped trying. I had lost confidence in myself and who I was as a person. It had made me depressed in ways that were so profound to the point that I needed ketamine. You know? And if it wasn't, if I hadn't been for the ketamine, I don't know, I might still be there right now. I might still be feeling that right now. So the ketamine was like a huge, it did help me with my depression. So, you know, spoiler alert, that really did. That did really help me. But just getting off of that Lamictal helped me so much

more. So this whole time, it's just wild to me that that was never, ever looked at when it is a known symptom. Like you would think that like a psychiatric doctor would be like, well, we did bump this up. Right. And that's when the changes started. I just, how did that happen, Dr. Nance? Like, how does someone not look at a change like that and see the impact? Like, I just, I don't know. What I think is probably the larger issue with your story, Kathy, is that no one doctor really took ownership of your problem, right? And no one said, I am going to get to the bottom of this. Yeah. And it may mean that I'm going to send you to other specialists,

and they may rule out some of these pathways. But in the end, it seemed like you didn't have that one person who was keeping score of everything, who was making sure that all of the check the boxes were checked. self-realized that the Lamictal was the issue. Did you have any discussion with the psychiatrist over what happened? Yeah, I had a psychiatrist who left and moved to a different state. And I, he recommended this other, the psychiatrist I'd been seeing that, that bumped up the Lamictal. And I was, had been thinking about getting a different psychiatrist. And at the very same time that this was happening, he did not want me to do ketamine, by the way, he was like, don't, don't do ketamine. That's a really bad idea. But I felt like I really had to listen to myself in that moment. You know, I just needed to, I needed to trust myself for a second.

And I had to do, I was desperate to do something. And so I know this felt like a desperate move and it cost a lot of money. It took a lot of resources, but I, I, I did it. And then after I did it, I went ahead and, and that's my psychiatrist moved back to my town and he agreed to take me back on. And so it turned out like I told the psychiatrist that this happened and his answer was sort of like, oh, well, you know, that's so good that you found it. What would you say is the takeaway for listeners who have been enthralled by your story, the courage it takes for you to come on a show like this and share this story with people that you don't know,

what would you say to everyone who feels like they might have been like you at some point in your journey? Yeah, as cliche as it sounds is to just not give up, you know, as hard as it can be and feel to give up, to just keep, keep going. Because even just trying to fix the symptom of depression ended up allowing me to, to know what was wrong with me. And that is something that, you know, and I'm still working on that. But if I had just given up, you know, I was just one little thing away, one tiny little thing away from knowing and being able to take back control of my life again and not let this control me

or the feelings that I have about it control me. And I think a lesson for clinicians is that we have to have an awareness that we are being biased when we see a psychiatric illness on the chart. I think we have to acknowledge that when we see anxiety, depression, bipolar, schizophrenia, that clouds our judgment. Not saying that it's right or wrong, but sometimes I think it's to the detriment of looking deeper into a problem because we always have the ability to go back to that diagnosis. And so I think it's about broadening our diagnostic scope to think beyond a label that exists on a patient's chart. Yes. If it gives you any peace at all, I will say that I did not come into this thinking I would be emotional or that this would speak to me so personally. But in this conversation, hearing your story has just made me feel a lot less alone. And I'm sure that

there are other people listening who have felt the things you felt, maybe in different contexts. My context isn't the same as yours, but it's nice to not feel alone. And I don't think there's a lot of people in my life personally that understand that feeling. So to hear somebody else's story and hear the honesty and the fragility in that, I just want to say thank you for sharing that because hopefully this will empower other people to not give up on themselves, to not think that they're crazy, for lack of a better word, and to keep fighting for health. Because when you feel good, it is worth it, right?

And I think you're a great example of that. And I just want to say thank you. Thank you so much. Because I didn't expect to be bawling my eyes out, but now here I am. How did we go from scrapbooking parkour to me bawling my eyes out? Not fair. I really, I really. really that's what I I'm I hope that it gives I hope that it can give people some hope even if it's even if my problem is not their problem just knowing that we can if we keep going we can overcome so thank you so much I really appreciate being on and

being able to share this thank you thanks for coming on and being so thanks Kathy the medical detectives is a soft skills media production produced by Molly Biscar, sound designed by Shane Drouse. If you have a medical story you'd like to see featured on The Medical Detectives, please email it to stories at TheMedicalDetectivesPodcast.com.