Your Questions Answered
Show Notes:
Last weeks episode #111 on "When Concussion Turns Chronic" raised a lot of questions. During this episode I take the time to answer some of those lingering questions to hopefully bring you some clarity.
Will step into the complex world of chronic illnesses associated with post-concussion syndrome such as autoimmune conditions, central sensitization disorders, and POTS. I’ll be sharing my battle tactics against these conditions and how they differentiate from PCS. We’ll explore the vital role of support and resources in dealing with PCS. Plus, share concussion and post-concussion awareness apparel that can help in raising awareness about this critical issue!
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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.
01:43
Welcome to episode number 112 of the Post Concussion Podcast with myself, Bella Paige. Now, this is a unique episode as this is kind of part two of when Concussion Turns Chronic. I don't usually do these types of podcast episodes because I don't do Q&As on the podcast, because I do those on Concussion Connect and I don't have enough time to do both. This is more like your questions answered. I thought I did have another episode planned for today, so that's why this episode is a little delayed, because I decided to plug this in here last minute. It's more like your questions answered type episode and that's because I've been said probably 200 plus questions from our latest podcast episode and I knew it would raise a lot of questions and that's okay. I can't answer them all right now but I will answer a few and I'll continue with Concussion Connect Help Series on a lot of this to really clarify kind of what's going on and things like that. I will answer a few here just to kind of make sure everybody kind of gets a better understanding. Now the biggest question I got was are you recovered from PCS, which I did talk about a little bit in the last episode? And the answer is yes, and I can tell you why, and that is because I don't have all the symptoms that PCS had, or my experience with PCS had, as persistent concussion symptoms, post concussion syndrome, whatever you want to call it. Everyone's experience is very different and we all know that. So for me it was.
03:18
Memory loss was a really big thing. I could read a page and not tell you what was on it. I was missing a few years. I have big gaps in my memory from when I was younger and going through this as well, I could walk into a store and not know where I was.
03:33
I had light sensitivity, overhead lights. I'm still not the biggest fan of overhead lights, but that's actually from another illness now, but I will talk about that in a little bit. But I don't have light sensitivity like I used to. I don't have noise sensitivity at all anymore. I don't have headaches like I had before. Don't get me wrong. I still get headaches, but I always know what they're from. They're not related to anything that my PCS headaches were from.
04:04
I had a lot of vision problems, like reading I couldn't read. Now I can read, actually shared. I think the other day that I read an entire book in a day. Well, I read another book in like 12 hours the next day because it was a series and it was really good. So that's not something I could have done in the past with PCS at all because reading was nearly impossible. So you know when you go down the symptom list of PCS and what is PCS? And if you want a list of these types of things like what is post concussion syndrome, what is CTE, how is post concussion syndrome diagnosed, what is a sub concussive head injury, how to live with PCS, types of treatments, what are symptoms all these types of questions that you might have or somebody else might have for you. We actually have an FAQ Frequently asked questions on post concussion Inccom that you can go to. I will link it in the episode description. That kind of just answers all these. They're not super in-depth answers, of course, but they definitely give you a basic understanding or where to go next to get you know more help, different types of Specialists you can see in your recovery journey. Sometimes concussion specialist is a little too general. So definitely something that you can take a look at and maybe it'll help you out now.
05:24
Another comment that I got during all of this was it's really bad, it's rude, it's. I can't believe you For telling people they won't get better. This is really disheartening. I don't think you're helping anyone and you know I'm just gonna throw this out there that I do all of this in my own time. There is sponsors on the podcast but, believe me, this costs a lot more than you could imagine and beyond what sponsors help us with. So this is all actually out of my own pocket. So when people kind of get like defensive and Kind of harsh towards me, I do take it a little personally, just because all of this is just help people. That's why it's here, that's why we accept donations. All that, because all of this is Is just hard work, and I do it to help people and for no other reason. And so Talking about chronic illness after a concussion is not telling you that you won't get better.
06:27
I'm hoping you all do. I just know that there is the few that do experience this like I did. I do know there's others that you know they're symptoms one away, but they're still ill and Maybe they're questioning it or maybe new symptoms that are arising, but they don't relate to that concussion symptoms list. So they can't figure out what's going on and they just, you know, throw it in that concussion bucket, like I talked about in the last episode. So it's important to talk about, because you may not relate you likely will get better, because it's unlikely that you do become this At the moment with basic, current research but it's important for those few, even if it's two out of a few thousand people, that this helps. That's what matters.
07:14
It's really about the small portion of people and just to create awareness, because we're here for everyone. I'm here for everyone, from people who have PCS for a month, for parents who are dealing with their Children having PCS, the opposite, everything. I'm here for our families, caregivers, support workers, specialists. We're here to create awareness. We're here to help. Well, I say we all the time I've been really working on that. It's just me I had a post about this the other day that I do all of this. There is no other team behind me. So, yeah, but I do believe that it can help a lot of people.
07:59
So the last episode, if it made you feel worried, try not to. Of course, it's really hard when you feel like you're never going to get better, but it doesn't mean things won't get better. It's just, you know, sometimes the roller coaster recovery is up and down and right and left, and sometimes you hit roadblocks, but it doesn't mean that you won't get around them. And so another thing that I got asked about a lot, which kind of relates to that, is how do I know what stage I'm at? Well, if you're really new to PCS and I don't want to make it seem like it's not a long time, and remember I am not a medical professional. I read articles but no MD here. But I'd say if you're still under a year or two years, I'd say you have so much potential to improve your symptoms, you have so much potential to improve your symptoms at five years. I've improved all of mine. Between year two and five there was a really big jump in symptoms and five and seven and then after that almost all of them were gone and then there was just a few things to sort out, like a few things with reading and things like that. So you know, sometimes those big jumps happen later on. But if you're around, then just really focus on your recovery. And you know, if your symptoms are all on that post-concussion symptom list, then that's most likely from basic understanding of how this stuff works, then you still have PCS and that's okay because you can recover from PCS.
09:33
And I had this conversation the other day on concussion connect about why do I call it PCS and not a brain injury, and there is no problem with what terms you use. I have a help series on this. To me, a brain injury is what happened. I had a brain injury. I had a concussion, where persistent concussion symptoms or post-concussion syndrome is something I have. It's more like the illness. It's more like you have a tumor but you have cancer. I definitely have other analysis and they're better in the help series. I swear because I was focusing on that. But I call it PCS instead of a brain injury because I had a brain injury. I don't still have.
10:16
It's not that my brain isn't still injured, but I'm working on recovery and I like using terms that you can recover from, like you can recover from post concussion syndrome and things like that. So kind of using that can really help people, but it's really up to you. And how can I recover from PCS and how do I know what stage I'm at? So I'm gonna go back to that for a few seconds. You know, really pay attention to your symptoms. Are they strange? Are they beyond what post concussion symptoms should be? Are they weird? Are things changing? Can you not figure out why certain things are happening? And don't forget, bring it up with your medical professionals that maybe you're concerned it's something else, and so a lot of my symptoms didn't show up until PCS kind of stopped, and maybe that's because I was finally able to be aware of them, or maybe that's just how it worked. And so how can I recover from PCS is something I got a lot of questions about, because saying you're recovered makes a lot of people get hope, which is great.
11:16
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12:25
So how can I recover from PCS? I have an entire list on that FAQ on post-accountation ink, of how to recover from PCS. And it's not how to recover, it's more like who you can go to, because we have a lot of treatments, a lot of specialists that are available to you to get help, and so sometimes you might not have thought of going to a specific specialist. So I really recommend checking that list out. I also really recommend staying positive, and I mean staying positive in the way that, okay, the eye therapy you did didn't work. Osteopath didn't help. The massage makes things worse. This doesn't help. Eye therapy doesn't help. Vestibular therapy doesn't help. Physical therapy doesn't help.
13:10
You have to remember that all these things take a really long time to help, which is really frustrating because they're exhausting, but you also have to remember that science is continuously changing. For example, when I started all this they said lay in a back room, stay in that dark room, don't leave it. Keep your sunglasses on, don't be exposed to light, muffle, all sounds, kind of seclude yourself from the world. And now we know that that is a horrible recommendation because it makes it really hard to get out of that dark room. Pencil pushups have become very advanced with technologies and the advancement of research and we have treadmill tests and heart rate tests to get back into exercise and all these things available to you now that we didn't have before. So you just have to remember that this is only a short period of time of 10 years, which of course is a long time when you're ill. So next year, when I go to the next medical conference I go to on brain injuries and concussions, who knows what they can come up with? So it's really important to kind of keep your hopes up that maybe it's just the next thing that's really going to make a big difference in your world.
14:19
Now another question I got asked was what chronic illnesses do I have and how do they affect me? Now I have a couple. Some are you'd kind of expect after the concussion and some are not so expected. So one is an autoimmune condition which is called Sjogrens, and so autoimmune conditions. There's overwhelming amount of autoimmune conditions out there. So autoimmune conditions, the cause of them is very unknown, sometimes trauma, sometimes head injuries, things like that can be a cause. So those were my causes, or their estimated cause, because of course we can't guarantee a lot of these things so that one is like dry mouth, dry eyes, so that one does give me headaches. It really dry sometimes in my mouth. It's really annoying, especially during the podcast. I do have a lung issue with that as well. So they're working at the Mayo Clinic, as I was just there. I have a lot of specialists helping me, and so that's one.
15:20
And dry eyes is actually something a lot of survivors deal with. So I really recommend those preservative free eye drops that come in the little vials. There's an eye mask you can find on Community Recommends, on Congestion Connect. That I find really, really helps If you find you get a lot of eye pain. You know you can use it at night. It only takes a few minutes and it creates so much relief and it's really not overly expensive. I think it's like $20 to $30. So you know, affordable but helpful.
15:47
Now I have something called central sensitization disorder, which kind of goes along the lines of fibromyalgia, chronic fatigue syndrome and there's a lot more in there and it's probably the one that's the most related to PCS, because it's very rollercoastery, like my body lives in bite or flight kind of permanently. That one causes really weird symptoms and I manage that a lot with lifestyle things and that's the one that I'm working on the course for for Congestion Connect, because it's very related and managing your lifestyle with illness can be huge, like sleep and relaxation techniques and hygiene and eating and exercise and friendships and relationships and all these things. You know you put the whole puzzle together and it can really help you. So that's really related to that one. The chronic fatigue is something that I find comes in way and I'm pretty good at fighting with it. But there is the odd day where I'm just the fatigue takes over. For example, I'll sit in my desk room sitting right now and I'll like fall asleep sitting up and I'll just kind of accept that I need to sleep for a day. But you know, other than that, that one's not horrible. I don't believe any of them are horrible. I have another one, pots. As a lot of you know we have an entire POTS course on Congestion Connect that is free with Congestion Connect and that one is kind of like.
17:14
A lot of people deal with some POTS symptoms or related POTS symptoms during concussion recovery. But POTS is usually a lot more severe. Like my vision used to just disappear when I stood up too fast. I used to look drunk walking down a hallway. So those are a few of them. It kind of keeps going a little bit. But is it worse or is it better?
17:33
The PCS was one specific question that kind of made me think a little bit and I would say it's better, and not in a way that it's better because there's no recovery for these. I've read about recoveries for some of them. My doctors told me there is no recovery for me, at least at this time. They said it's not random, we know why it's happening. It's not going to go away, but it can get better and get worse at certain times in your life, but it's not going away and so the chronic aspect is definitely harder to accept and get through. But once I got through that I'd say it's definitely better, mostly because it doesn't affect me every day, all day, in the same way that PCS did. It doesn't throw me to the wall so often because my POTS isn't very severe.
18:27
Do a flare-ups, like I went for a hot bath and I ended up in bed for like two days, I couldn't even get up, I almost couldn't land on one, and so I do have some flare-ups of those things. It's just habits. Everything to do with my chronic illnesses are daily habits that I can control, and now that they've become habits I don't have to think so much about them. So it's not as crippling as PCS, at least in my mind, because the pain in pulse congestion syndrome was really awful and what I do that doesn't have a ton of pain other than my eyes and my lungs. Okay, there's pain, but it's different. I find headaches are the worst type of pain because headaches don't allow you to think, walk, talk. You know it's really difficult to kind of participate in society. A lot of my symptoms don't prevent me from going out, like noise sensitivity, light sensitivity, things that prevent you from interacting with others I don't deal with. So I definitely say it's better.
19:24
It's different though. Pcs has hope at the end of a tunnel where chronic illness the hope is just to keep going or to manage it better. But it's not that it'll end. So it's definitely a different perspective. You know I'm affected every day, but some days less, sometimes more, and it's very similar to PCS. You know I find it's a little less life-altering than PCS felt. Now there's so many requests and questions and I did answer some and if I didn't answer you I'm very sorry. I am working through them.
19:56
Our latest podcast episode on my concussions during chronic was a hard episode. It was a hard episode for me to share. I've been thinking about sharing this for months, like probably six months I think and it was a hard door to open because of all the questions, all the requests, all the you know backlash for saying people won't get better. And I didn't say that. I just said that some turn out with chronic conditions instead of just PCS, or PCS goes away and then the chronic health conditions are there. Remember to check out the FAQ.
20:30
We do have concussion awareness well-being that I love. It says concussions suck. On one of the shirts we have podcasts sweaters and t-shirts. If you want to kind of you know, support this show. There's one that says there's nothing mild but a concussion and things like that. So definitely check that out because I really love it. I actually live in my few t-shirts that are from that line because they're my favorite to wear around. Make sure you check those out.
20:56
I know I talk about Concussion Connect a lot, but I think that's because it's where I spend most of my time. Do make sure you check that out as well, and I hope this helps you. And, believe me, if you have any questions, don't hesitate to ask. I have no problem answering everyone's questions. It just sometimes takes me a little bit to get back to everyone, and I hope you all have a good day, or at least a little less symptoms. If you can Need more than just this podcast, be sure to check out our website, postconcussioninccom, 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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This cookbook was something I had been looking for! It pairs nutritional information specific to concussion recovery with tips for symptoms, and the recipes are delicious!! My husband and teenager loved it too! Very grateful to have this resource! - Halli
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