When Concussion Turns Chronic
Show Notes:
It starts as one concussion and maybe that's all it takes but for myself (Bella) it took quite a few. Then the symptoms you may know all too well came about such as chronic headaches, crippling fatigue, depression, and more. This part was the longest, or so I thought would be the longest until I recovered.
But what if I didn't.
I am now in the longest part of my illness journey that I know of because this time I know it's forever. There is no recovery to make, yet I have "recovered" from post-concussion syndrome. I don't have PCS anymore because I am one of the few cases (maybe more than we know) that became chronic.
Chronic illness is a tough challenge to overcome as it's the forever type. Listen in as I share a glimpse into how these diagnoses came to be and some comfort if you may be one of the few whose recovery is not exactly a recovery after all.
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Bella Paige
Host
00:03
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. Do you feel constantly overwhelmed by your concussion symptoms and life changes? This is where Wombat. Wombat can help you A new breathwork and somatic therapy app powered by neuroscience. Let's slow down those racing thoughts and give ourselves the ability to breathe. Wombat is designed with an understanding of the impact of trauma on individuals, ensuring a safe and supportive environment for users dealing with stress, anxiety or post traumatic experiences. Go to their website today at hellowombatcom.
01:40
Welcome to episode number 111 or 111 on The Post-Concussion Podcast with myself, just Bella Paige, today and I haven't done a solo episode in a little while and I usually do these when things cross my mind and this episode is on when things turn chronic. I really wanted to talk about this even just for a short minute today and get it out there, because it's something that's really missed in the concussion world and oh, don't get me started on how much all of this, this entire podcast of over 100 episodes, has been missed in a lot of the concussion world. But we talk about recovery a lot and I don't want this episode to be something that takes away your hope. I don't want it to be something that stops you from your therapy. I don't want it to be something that kind of crushes you in a way. But the reality of this episode is that we talk about recovery a lot. We talk about hope. We have specialists on here talking about what's helped and what they do for their patients, and we talk about survivors and what they've tried and what works and what doesn't work for them and you know what. All these things are really important and it's really important to try so many things.
03:14
The biggest thing about this is you will never stop finding new things to try. I know it might feel like that. I definitely felt like that, even had doctors that told me that there was nothing left, but there is always something, and that is actually something I do I can help you with. If you ever have a hard time finding specialists in your area and all that, we do have one-on-one coaching on our website. You can sign up Super simple. I hope you have a time that works for you and I will help you find those people for you. I will help you find the next recovery step for you, because when you're navigating it by yourself or with people that have nipped, been through it, it's really tough. So if you take it from my perspective as someone who's done this for a very long time, has tried most of these therapies herself, has talked to the experts I can really help you get to the right medical professionals. So you know, go to the website. If you go under more, you can find one among coaching with me and I can definitely help you with that.
04:14
Now, if we go back to the chronic part, if we talk about recovery and how you can recover and lots of people, I do believe, recover and I believe recovery is something that everybody deals with in a different way. I've had guess recover to the point where they don't have any symptoms and I've had guess recover to the point where they are recovered but they're still dealing with symptoms. And so something I want to talk about, because if you've been on Concussion Connect, then you know I was at Mayo and you know I've been there quite a few times since then and I've spent a lot of time with a lot of specialists and what can happen after a concussion. And you know don't quote me because the research on this is something that is very new, it's really developing. You know you hear about CTE and CTE is real. Cte is terrifying, if you ask me. You know what. It is scary and that's okay that we're scared of things. But there's also another path that can happen after a concussion and the stress of a concussion and I know we don't think it's just stress, but stress on your body is something that can cause illnesses and there is a lot of research articles that back me up on that one. So the other path is chronic illness, and chronic illnesses are things that don't go away. People don't understand what chronically means. So chronic illness is something that you know.
05:45
Post concussion syndrome or persistent concussion symptoms has an end date. It's usually just an unknown end date. Where chronic illnesses that end date is gone. There is no end date, there is no therapies, because this is it, this is what you're dealing with, and then there's just the ways on managing that. A lot of time that's an aerobic exercise lifestyle, all these things. I am working on building a course that kind of goes with a lot of these things, because it not only helps post concussion syndrome survivors and brain injury survivors, it also helps the people that hit the next part, which is the chronic illness part, and I don't know what percentage of people this is. It could be 1%, it could be higher, it could be 10%. I don't know. I don't have the answer for that, but I do know it's enough people that have noticed that it's not just me.
06:43
I have been diagnosed with four chronic illnesses and they are a result of my concussions and my stress, as we like to call it in an easier way, of the first few years, and I don't like to blame stress, but if you think of the state that your body might have been in if you were like me, where you couldn't get out of bed, you couldn't get up and down the stairs, you could barely breathe most days your head was in such severe pain. You were very depressed. That's a lot on your body to go through every day, especially if it's for years. So there is sometimes an aftermath to that and I have these chronic illnesses. One of the common ones a lot of people hear about is POTS, and POTS is Posteroarthesthetic Tachycardia Syndrome. We do have a course on concussion connect about this, on kind of living with it, and it's something that can really range from people who faint and can barely exercise to people that when they stand up they get really dizzy. They have a hard time in the heat. It's not always that extreme. It really depends on who you are, and that's another thing about chronic illness is it goes a lot with the concussion stuff because it's sometimes all over the place. The biggest reason I wanted to have this mini episode this week is Because I know there's other people out there that are really questioning if they have PCS anymore. I know there are people who are out there questioning that they just don't get why they still have symptoms, and you know what? I was one of those people for about three years.
08:20
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09:28
Welcome back to the Post-Concussion Podcast with myself, bella Paige. So forever on the show I've been saying I've had PCS for over nine years and then, after Mayo, that swapped I really paid attention to seven years. I had it for about seven years and that's because that's after Mayo I realized when it switched, when it wasn't really PCS anymore and it was more the chronic illness stuff that started to flare up. And it's flooded up more and more the last few years. But now I have help, now I have doctors, but that's because we were able to name the illnesses, and naming chronic illnesses is something why I really wanted to talk about this, because it can change your life. And I'm saying that because a lot of the time we deal with things every day and we just shrug them off and it's not always normal. And I'm going to list about 15 things maybe not 15, but I'm going to list some of the symptoms that I had before I went to Mayo that I thought that everybody dealt with. So not everybody dealt with. That I thought were just like from the head injuries, that they were just things that I dealt with, that there was really nothing to do about them, and then they were just there.
10:43
Okay, first one always cold. I was always so cold that I would shiver in plus 15, which is or 59, 60 degrees Fahrenheit, depending on you know what part of the world you live in. My teeth were starting to fall apart and my dentist was working on it and accused me of being bulimic, which I am not. So that was a stressful moment in life. My chest felt like I was drowning every single time I exercised. Even just going for a hike, I would have to lay down sometimes or sit down because I felt like I was being crushed. I would get really nauseous during certain cardio, like I would just felt like I was going to pass out, but I wouldn't hit the point of passing out. My stomach was super upset all the time. It would always rotate between being like rock solid and bloated to okay. It was just awful.
11:38
I had a lot of trouble with eating. Food sometimes was stuck in my throat. I needed water to eat. I could not eat like a piece of toast, bread and apple without drinking water to get it down. My eyes were so dry that I couldn't wear contacts anymore and it was creating a ton of headaches. They were in tons of pain all the time. If I wore contacts for about an hour or two I would have to take them out. I would have stars and halos in my vision a lot of the time when exercising I had a lot of chronic fatigue, some days but it would go away, and at other times night terrors would get really bad. I once went into a sauna and when I came out my face couldn't get touched because my skin was so sensitive. I hands wet, purple, just trying to lift bags into a truck and the cold caused a lot of pain in my whole body.
12:35
And you know, that's just a few of the ones that I can even list that I can think about right now, and you know some of those are very obvious, but when you've been sick since you were 15, they don't seem that bad. And I think that was part of the problem is I was throwing all of these health symptoms into a bucket of concussion and sometimes you have to get rid of that bucket and realize that it could be something else. And my sister, who's a nurse, basically ripped me apart for having all these symptoms and not mentioning it to anybody because a lot of them I was self-managing the stomach symptoms, I was self-managing with different diets, eating things, and it's not that what I was doing was the wrong treatment, but sometimes there's more that you can do. So the swallowing, the eyes and all those types of symptoms go with something called chokrins, which is an autoimmune condition that I have got. Once I got proper help with my eyes rather than just going to my eye doctor about having trouble with my contacts, so many of my headaches have disappeared that I knew were from my eyes.
13:37
So it's just sometimes these little things can really help, like when I used to get out of bed I would just look drunk. As my girlfriend's would explain it on a weekend is that I look like I was drunk when I walked down the hall, but I didn't realize that that's not normal. And I knew it wasn't normal, but I didn't realize that it was something that I could fix because it was just something that I knew. If I got up slowly then I could deal with it. But now I have a ton of solutions to prevent that. Now I don't feel like that anymore at all in the morning anymore.
14:10
So it's just a reminder that sometimes things aren't your concussion, sometimes things are a continuance of your concussion and sometimes we just have to keep being our own advocates and that part's really really hard, and I know going through all this is really hard. I had seen tons of doctors while going through all this, but none of them talked to each other, so they didn't connect a lot of the dots, like I saw my eye doctor, I saw my dentist, I saw my family doctor for breathing and allergy medication and things like that. I was seeing many different specialists, but we didn't put it together that all these symptoms could be specific chronic illnesses. And now that I have names for them, there's treatments Well managing treatments, there's things that you can do to make them better, and so that's really why I wanted to talk about this today, because I know I'm not the only one. I know I see people always commenting tons of lists of symptoms and, don't get me wrong, brain injuries and concussions put your whole body at a whack, but sometimes it's something else and Sometimes you're the unlucky one. I don't really have another answer for it and I don't believe things happen for a reason. Sometimes you're the unlucky one that deals with the chronic illness, and I'm telling you that you can live with it. It just might be really hard. Sometimes.
15:42
Dealing with chronic illness has a very different mental state than dealing with PCS, and that's because you get to the point where you know it's not going away, where, with PCS, there is hope, there is recovery. Tons of people recover. Tons of people get better. There's so many things out there. Concussion research is just growing and growing. But if you hit the chronic illness stage whether I'm only talking to one person right now, that's listening to the show that's in the same boat, that's all that matters. But chronic illness is the point where you have to Accept that it's not gonna change and I think that's a really hard thing to get through. It took me a lot of time. There's still moments where I'm like, oh, I'm, this isn't going away. Like I get that comment oh, you're so strong, and it's like I'm not really strong, I don't really have an option, like there is no way around this. This is what, who I am, this is what I'm dealing with. So I just want to put it out there that if you are going through this, please reach out, please check out.
16:41
Concussion connect even the chronic illness survivors because a lot of it relates talking to others who get it makes a difference, and I'm telling you it does, because it's made a big difference for me and you know there's tons of other places you can go. But concussion connect is really Tailored for survivors. It's not overly symptomatic it's really designed for. You know there's a lot of excitement on it every day. You can go in, there's something, there's mems that relate to brain injuries and concussions. There's tips on Tuesdays, which really can help you. Wednesdays, there's news. Thursday, there's the podcast. Friday there's a health series and there's even more that comes out every month.
17:25
As a survivor, I want to help a lot of survivors and I also want to help the people that hit the part like me. You know the chronic illness part, and when things turn chronic, your brain has to change. You have to learn how to manage these symptoms without the idea that they're gonna slow down. And don't get me wrong, things flare up, things flare down, but it's not going away. So it's a very different mental state. It's definitely something that takes time, but it's definitely something I can help you with.
17:54
So please reach out, because I'm going through it and I know it can get really tough and and I'm not gonna say it's this wonderful thing to deal with, because it's Definitely not PCS isn't wonderful to deal with, and so you know, if you're dealing with the time the symptoms reach out to your doctors, explain them together, get someone to listen to you. Maybe they connect, just like a concussion connect. It's very important and you know, I just want to leave with everyone today that this isn't a reason to not have hope that you won't get better. It's just to help those who aren't feel like they're not the only one, because you're not Need more than just this podcast. Be sure to check out our website, post concussion Inccom, 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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