Fight Against the Unknown with Luke Jordan
Show Notes:
Imagine living with a condition that not only causes physical symptoms like dizziness, nausea, and migraines, but also impacts your mental health and ability to communicate with others. That's the reality for our guest, Luke Jordan, who joins us to share his journey navigating the often misunderstood world of post-concussion syndrome. Through this powerful conversation, we gain insight into the challenges and triumphs of living with this invisible injury.
Luke opens up about his experience as an athlete and how a series of concussions led to the sudden onset of post-concussion symptoms. We discuss the importance of understanding this condition and finding the right people to talk to for support. Luke also shares his experience coping with the mental side of post-concussion syndrome, including health anxiety and insomnia. Through various therapies, he has found relief and ways to manage these challenges.
Don't miss this opportunity to learn more about the reality of living with post-concussion syndrome and the resilience it takes to move forward.
Key Points From This Episode:
2:18 Luke shares the beginning of his concussion experience and symptoms
7:17 Vision and speech therapy
9:29 Bella discusses exercise intolerance
10:39 The mental health aspect of PCS
19:21 Personality changes post-concussion
Get in touch with Luke on Instagram @lukemjordan
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Bella: Hi everyone. I'm your host, Bella Paige, and after suffering from post concussion syndrome for years, it was time to do something about it. So welcome to the post concussion podcast, where we dig deep into life when it doesn't go back to normal. Be sure to share the podcast and join our support network, Concussion Connect. Let's make this invisible injury become visible.
The Post Concussion Podcast is strictly an information podcast about concussions and post concussion syndrome. It does not provide nor substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. The opinions expressed in this podcast are simply intended to spark discussion about concussions and post concussion syndrome. Welcome to episode number 102 of the post concussion podcast with myself, Bella Paige and today's guest, Luke Jordan.
Luke was raised in a small town and played many sports As an athlete. Our mind is trained to push through adversity and pain. When our mind is injured, it can be tough to push through. Suffering from nausea, migraines and dizziness limited the stress Luke's body could handle. Pcs is much worse than any of the broken bones or sprains he had encountered, and that is because with a broken ankle they give you a timeline. Luke broke down when the doctor told him that they didn't know when his symptoms would go away or if they ever would. Forcing himself to challenge his brain through different therapies has improved his mental health. Luke believes setbacks in our lives are our best teachers and has become grateful for what this time has taught him. Pcs has taught him to be thankful for the little things in his life. and then he gets to go to work, not that he has to go to work. Welcome to the show, luke.
Luke: Hey, thank you for having me. I think it's awesome what you're doing. It's your platform and it's probably an awareness for everyone.
Bella: So, to start, do you want to tell us a little bit about how you received your concussions?
Luke: Yeah, so I've had two concussions and actually the first concussion was about five years ago. I was playing basketball and I was, and I was guarding a person and he brought his elbow back, hit me right in the face, broke my nose and I was blacked out for about a couple of minutes. Actually I don't remember a lot of it. They didn't even test me for concussion because I had broken nose. They did a CT scan But that was it. So that wasn't that bad because I healed in about a week. I wasn't dizzy or nothing, no really signs of post concussion syndrome.
And then my second concussion, which was the recent one which made me get post concussion syndrome. I actually was outside working on my garden and my house. There's like a steel pipe, there's like these trees, like these shrubs we have, and I was just like trimming them and stuff. I looked like on the ground and I thought there was like some metal, like shiny object. I was just curious what it was. So I went to go pick it up and some, like deer fly, bit me right in the back. So I like kind of like swat my back. You know, when I swat my back I brought my head up and I hit the back right side of my head and boom, and since then, after that was about an hour, i didn't really think anything of it. I'm like, ah, you know, i've got hit in the head a lot, it's okay, just a bit of a mess. I was sitting down for about an hour after that, just resting, put some ice on it. I got up and everything was just spinning. I'm like, okay, i definitely have concussion. So I just was like, okay, rest, i'll get better in about a week eventually. So I didn't even go see a doctor until I think it was a week after. I actually was working my job. Still, you know, i was just all like I love it And I had like this busiest weekend of my life and I just lost it.
Like Sunday night I came home and I couldn't like see anything. I couldn't eat because I just wanted to puke. So that's when I went to see a doctor. After that, yeah, good plan. But the docs actually said that you know, just do what you're doing, just try to stay off technology for a bit, and it doesn't get better. Like when, three weeks, they said come back. So that's what happened.
They ended up sending me a neurologist that diagnosed me with post-profession syndrome and, yeah, my symptoms that I experienced from that is dizziness. Actually, when I first got injured, that my like my eyes just couldn't focus right, and that's what happened, for it still happens today, but it's kind of a lot better. It just feels like you can't focus on one thing, like it's jumping around. It feels as if you're just like got out of a surgery or if you were drunk, like the first like couple months. I don't remember any of that stuff. Like I moved down, so I go to the university down here and I moved down to my apartment. I don't remember any of that, It's just all blur.
Luke: Anyways, i still get migraines a lot but I got them a lot every day for the first five months of my injury probably. Usually when I get those migraines they come with nausea, very nauseous. I would get It kind of freaked me out at first. When the doctor referred me to a neurologist. She also scheduled me for MRI and CT scan to make sure that I wasn't like I don't know, have any rule out other stuff Same as a blood test. So I actually, before that, all those tests ran. I was like scared to death because I didn't know what was going on. I thought maybe I was just dying. I felt like puking, but I never did. I just told myself not to puke because I freaked out for dead. All the tests came back good.
Eventually I saw a neurologist. They put me on the end of tripling for my migraines. That did not work But, as I said to you, put me on magnesium and vitamin B2. That helped a lot. No, i didn't really have those anymore. I also get renein in the ears, neck pain, exercise intolerance is a big issue for me. I used to love weight lifting a lot And I just I can't do it anymore. The next day I feel like just laying in bed Epic migraines I get After neurologists. They basically I took a neuropsych test.
They wanted me to do a neuropsych exam. That was brutal. I was like five hours.
Bella: Yeah, they can be real.
Luke: I haven't felt out bad since I first got injuries, but that came back with speech impairment and memory issues. I had to go to speech therapy. I actually just got out of that, so that is awesome And it proved a lot. And they also said that I need vision therapy because I had a tension problem, which made sense because my eyes had a hard time focusing. I just started to the doctor, i didn't know what else to say about it, so they sent me to vision therapy. Actually, i got sent to vision therapy. They sent me to this physical therapist who's never done vision therapy in life. So I was like the guinea pig. I'm like are you kidding me? I don't know, but it kind of helped a little bit. So the vision therapist like I'm going to send you to a neuro-optimologist for more testing And they deal with concussions and he's a really good one. I'm like, okay, sweet. Well, that was in November. And they're like, oh yeah, our next appointment's in February. I'm like, oh nice, i love that, just awesome. So I got tested for that.
The doctor said I had four different things wrong with me. One was my midline was off. So that's why I have these glasses These are prism glasses to correct my eyes that work together. The three other ones were basically just for, like, focusing on divergence, convergence, just eye movement in general. Different diagnosis, day diagnosis. So I could do vision therapy for that. So I started vision therapy. I've been in vision therapy. It's been getting better. I've been tolerating more. It's still hard. I do get reexamined very soon for these glasses. And yeah, no, that's like a lot of my story.
Bella: Yeah, for sure It's tough, I think, a lot of the time when you get injured and then you get injured again like years later and the injuries might not match in your head, it's like, oh, that one seemed worse than this one, but now I'm worse from this one. You know, it doesn't like line up the way you think it would in your brain And that can be really challenging. And you kind of talked about that exercise and tolerance and things like that, and that was something that took me a long time to kind of find what worked.
Luke: Yeah, exactly.
Bella: I remember getting really frustrated because I used to run quite a bit before this all started And then it got to the point where, like I could not do anything, where my head would go up and down Like you mentioned weightlifting, like if I need to bend over and pick up those weights. That was, that was.
Luke: The big helper is the worst thing for me.
Speaker 2: It is. It's that head rush or like I would bend over, because I was in high school and I'd be in like gym class, i'd bend over to pick up weights and I'd stand up and the whole world would be like black. And then I'd have to wait a second and then and somebody be like where'd you go? And I'm like, oh, nowhere, you know, just can't see anything, and it's like, should you be doing this? I'm like I don't really know, like lots of those types of things where that like up and down motion would kind of make me feel, like you said, that nauseous feeling. And then you know, exercise, i find it's hard because you get like deconditioned and then you add that into it all And it's just like I used to do this and now I can, and it's really frustrating.
Luke: Yeah, it's really frustrating. And also I didn't talk about the mental aspects. Those are probably the worst symptoms out of any of the symptoms, to be honest, because you just don't know what's wrong with your body and you get health anxiety and you're just freaking out every day. I got to the point where I couldn't even sleep, so that was bad. So I had to go see a therapist. That helped me out a lot, but it's just it's painful. I'm still struggling with it. I mean, i was probably at the lowest point I've ever been in mental health when I first got it, so I can imagine when some people are still going through right now. For sure.
Bella: Yeah, the mental side of it is huge. And, going back, you mentioned the delay on appointments. I find that can also affect your mental health, because it's like you're telling me that I'm about to come back in six months or in a year. I think the longest I ever had was a year. I've had two specialists that were. They referred me out and then the appointment was the year after. Yeah, and I just think like, so I have to struggle with this for a year to meet this doctor. that might not even help me Exactly.
So super frustrating and then mentally you get really down on yourself. I'm kind of talking about, you know, going back to like that mental side of it. You know you mentioned kind of being freaked out and all those types of things. So do you want to talk a little bit about how did you get through not understanding what was going on with yourself?
Luke: Yeah, i thought about that today and I'm like I really do not do a good job, but I tried to. It's a work in progress. Oh it is. Yeah, i think some of the things is just center yourself around the right people, people that listen, people that I notice. that makes it worse. when I talk to people and they're like trying about stuff and then they try to like blurt out their opinion, i'm like I'm sorry, but you just don't know what's going on in my body right now.
Bella: Yeah, for sure
I used to have a hard time when people referred to their own things and like I'm not saying your stuff doesn't matter. But for example, before we recorded this, i had the that POTS attack and it was really bad. Like I went for a hot bath and I woke up at 5 am and almost called 911. Like I was almost convinced that I didn't know what to do, but I didn't know what they would do, because I couldn't think of what they could do And I was like freaking out. And then that made it worse.
I couldn't breathe, i had all this nausea, all these types of things. The headaches were severe, my stomach pain, like all these types of things are going on, and I was like I haven't felt like this And like I couldn't remember when it had been a really long time, and so it kind of scared me a little bit because it's like well, like what did you do to feel like this? And then I kind of remembered the bath and I was like, oh, ok, you've done this kind of before, but never this extreme. So I talked to some of my friends about it and I had one say well, i felt like that after a bath. And I'm like yeah you have not.
You had a bath and you got too hot and like maybe your heart raced for five minutes And you know, like I know people like you go for you go in the heat. You kind of get like that feeling of like heat stroke for a minute where it's like it's too hot, like your body kind of panics for a minute, but that goes away. Yeah, i was stuck in bed for 24 hours because of that Like I think I didn't get out of bed until 11 am. The next day is when I've managed to walk and not fall over or not feel like I was. Yeah, so that is not the same as. Oh, i felt that after a bath too And I'm just like no, i'm trying to be really nice And I appreciate that like you're trying to relate to me, but you're wrong And I think when you're trying to understand.
I understand what you're going through, like you said, and you're trying to talk to people about it. It's hard because you don't know what's going on, so trying to explain it to people is like they're trying to get it but you don't even know how to explain it. So it's just like at one point.
Luke: I mean, at this point I just don't explain it. If I really need to. I usually actually have, like, my therapist write a letter for me, so like if I need to give it to a boss or something, and explains everything, just for important, like people I'll explain it to. but I won't explain it to a lot of people because it's just, i found it pointless, it's hard, don't explain it. So people should have therapists for that, which I do still. So that's good.
Bella: Yeah, And it's frustrating Actually, like the 101 post concussion life tip just came out And actually one of the tips kind of talks about whether to tell someone or not, because that's really up to you. There's so many different factors that come with that. It's not just oh, I should just share it with the world. And when I started going through this, I wasn't telling anybody because I didn't know what was going on.
I thought it was terrifying And I thought I'd scare them if I really told them how I felt. Like you know, i had that kind of mental health thing where, if I tell you that I feel like I shouldn't wake up tomorrow, how are you going to react to that? So those types of moments are really tough And that's where therapy could be really beneficial, because you have a safe place to talk about those things with a professional who actually knows how to react to them, because, friends, they will do their best And it's great to have a support system. But it is also very good to have a medical professional that will react to you properly and will give you tools to kind of manage a lot of those emotions of not knowing what the hell is going on with your body.
I found for just mentally. I found cold showers are actually kind of nice. They wake me up and I kind of just forget everything for a while. I also my therapist suggests exposure therapy. So I try to plan something out, like every day. I know that might make me feel like crap, but like at the end of the day it helps me mentally too, because I feel like I did something. So I just got to find you got to find that balance between physical and mentally what you can tolerate, i guess.
Bella: Yeah, and finding the balance of all this is something that takes a lot of time, but it's not something that you can't do. You can definitely do it Exactly. So we are going to talk a little bit more about kind of personality changes and expressing you know how you're feeling and getting through that. But with that we're going to take a quick break.
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Welcome back to the Post Concussion Podcast with myself Bella Paige and today's guest, Luke Jordan. So what I mentioned was I really wanted to talk about kind of the personality things that can happen after a concussion. It's something that happened with me and it's something I actually had to work with my neurologist with, because my personality change was I'm very intense and my body wouldn't let me be Like I like to have a lot on the go, like, for example, my typical day is like working working on a book, walking my dog, cleaning a house, doing yard work, maybe seeing friends and reading. You know like I'm just like there's a million things planned out in my day and I was always like that to not being able to get out of it. So you know it could be very extreme one to the next to get used to. So how was that personality change or kind of like body changing, what you can do? How did that go for you?
Luke: It was hard because, just as you said I went through, i was always like go, go, go, and I have like everything planned out. I need to do this, i need to be doing something, basically. And when I can't do that, all of a sudden the mental aspect just hit me. I think it was not until about two months after it really got bad and that's when I'm like okay, this is actually not good. I started losing weight too, a lot of weight, just because I wasn't doing anything. I probably didn't eat that much. It was not good.
More of my parents see it now, and now, like after the fact now it's been almost a year I can talk about stuff and I don't get wild off They actually said like yeah, we can tell you're just not yourself for a while. I'm like oh, i used to always just smile all the time and I was not smiling for a while at all. I was just always mad and I'd also get like these weird ages kind of, where I just get mad for no reason And then about 30 minutes after, like once I like go into my room or something somewhere alone, just give me anywhere. I would just break down Like I just get really sad and it's hard. I mean, it could happen yesterday for me, so it still happens, but that's really what I go through a lot. My personality.
Bella: For sure, And you mentioned that like do nothing kind of brings on like the mental health And I think because you get to sit with your thoughts a lot during post concussion syndrome, post concussion life, brain injury life, because you're not doing as much And you're sitting with thoughts after being sick, So they're really strong, And I think that part can be really tough, like you said, And it's really hard to get out of that because it's hard to distract yourself when you can't do a lot And it takes time to figure out what you can do or to even find new hobbies that you're interested in doing with your symptoms.
For example, I've tried a lot of random hobbies and you know it's really tough to find things. That's like okay, what can I do? Like I love puzzles But there was a period of time where I would do them and it was great because it would kind of distract my brain, because I had a really hard time thinking about other things. But it was almost like at the same time, like you said, how if you work out you felt bad after. I would feel like that after a puzzle because I concentration, I was doing a puzzle, It's so sick year, but the next day I kind of feel like way worse And it's like, okay, well now, like, do I keep doing them, Do I not? So that's where, like that, you know it helps my mental health. Like that balance of mental health and physical health is something that people, I do believe if you're dealing with this for a long time, it's something you have to figure out how to kind of balance.
And you mentioned your parents noticing, and I think that's great Because I think it's really healthy when people notice you've changed, Yeah, Because you notice it. And then I think that acknowledgement, it can be really emotional to hear it from somebody else saying like Oh, you haven't been yourself, or like you're really off today, what's wrong. But it's also really healthy to notice that other people can see this, because it is so invisible, You know, like they actually saw that something was wrong with you, even though maybe you didn't say something was wrong. So I think that's something that's really good. And you know it's just it's something that you have to get through one day at a time because it's always changing, your body's always changing.
And you mentioned those emotional outbursts or the rage. That is actually something that I dealt with. That was so severe to the point that I would like explode like on my mom, on my siblings, and I would just yell at them and tell them basically like I can't even use those words on the podcast, to get out of my life and to leave me alone and never talk to me again in a nice way is how it sounded. And I was like that for a few years, probably two that it was that bad where I was just horrific And I didn't know how to control it until a lot later And it was like I'd get like that And then I was over emotional because I got like that And you know like it's yeah, I swear the way you can catch the symptoms of workers so frustrating.
Luke: I find like helping with, like not knowing you know you're going through all these changes. I just I meditate a lot, I just listen to books, I try to just get in my own world And I'm also a lot in the faith too. But yeah, no, just find something that you, I guess, want to distract yourself with and can have your alone time. That's like huge, Because I think, just like taking a minute to realize, okay, I'm going through this, but it will get better. This is huge.
Bella: Yeah, it really is, and so we've talked about quite a lot.
Luke: Yeah.
Bella: And in this short time, from all the symptoms, you've dealt with some therapies. the emotional and mental side of this trying to explain to people what you're going through is something that I think that is very challenging, But at least now people can look it up and something comes up on the internet if they actually bother and are interested in what you're going through. So that is very helpful. But is there anything else you'd like to add before ending today?
Luke: No, not really. I mean, I could add a lot more, but this has been pretty good. It summarizes everything.
Bella: Yeah, for sure. Well, I just want to thank you so much for joining us today and sharing your story post concussion.
Luke:Thank you for having me, Bella.
Bella: Need more than just this podcast. Be sure to check out our website postconcussioninc.com, to see how we can help you in your post concussion life, from a support network to one-on-one coaching. I believe life can get better because I've lived through it. Make sure you take it one day at a time.
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