The Seasons of Post Concussion Syndrome with Cristabelle Braden
Show Notes:
Brain injuries don’t just happen on the sports field or during car accidents. In fact, falls are the number one cause of brain injuries, and today’s guest, Cristabelle Braden, has suffered from multiple. When Cristabelle’s first TBI occurred 15 years ago while she was playing a game at her church’s youth group, medical professionals knew a lot less about post concussion syndrome than they do now. So, Cristabelle was sent home without all the information she needed, and as a result, she has fallen and hit her head numerous times since the initial incident. Some days just getting out of bed is a challenge, and other days she is able to live a full life as an award-winning singer/songwriter, speaker, writer, podcast host and advocate. During this episode, Cristabelle shares how through faith, community, music, and never giving up hope, she manages to weather the “winters” of post concussion syndrome and thrive in the “springs!”
Key Points From This Episode:
Cristabelle shares how her first TBI occurred.
The reason for the subsequent TBIs that Cristablle experienced.
How Cristabelle’s first TBI transformed her life.
Medical advice that Cristabelle was given after her first TBI.
How society’s understanding of post concussion syndrome has evolved over time.
The intention behind Cristabelle’s podcast, Hope Survives.
Cristabelle shares what helped her through some of her most challenging times.
Advice for dealing with the “winters” of post concussion syndrome.
How getting COVID-19 affected Cristabelle.
What dysautonomia is and the side effects it can have.
The positive impacts of proper nutrition.
Value in seeing a functional medicine practitioner.
The uniqueness of every person’s post concussion experience.
Check out Cristabelle's website: https://hopeafterheadinjury.com/ and her music which is truly amazing https://cristabellebraden.com/
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[INTRODUCTION]
[0:00:05.2] BP: 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.
[DISCLAIMER]
[0:00:34.2] BP: 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 concussion and post-concussion syndrome.
[INTERVIEW]
[0:01:19.2] BP: Welcome to episode number 82 of The Post Concussion Podcast with myself Bella Paige and today’s guest Cristabelle Braden. Cristabelle is an award-winning singer/songwriter, speaker, writer, podcast host and advocate for brain injury. After suffering a traumatic brain injury, she began to write music. Since then, she has surpassed medical expectations and thrived in her new found gift in music.
She has come from relearning daily life tasks and brain injury rehabilitation to setting her feet firmly on the ground as a songwriter, speaker and artist with a message of hope. Whether speaking or singing, she brings her powerful testimony and a message of freedom, healing, and love wherever she goes. Welcome to the show, Cristabelle.
[0:02:06.1] CB: Hey Bella, thanks so much for having me.
[0:02:08.4] BP: So to start, do you want to tell us a little bit about the injuries you’ve had?
[0:02:14.1] CB: Sure. So, I’m Cristabelle, I have had multiple traumatic brain injuries. So it’s kind of hard to narrow it down. You know, when somebody says, “How did you get your brain injuries?” It's like, “Well, which one and what time period are we talking?” So a lot of the effects from my injuries have not just been from the one, it’s been quite a long journey. But my first TBI was December 2nd, 2007.
So I’m coming up on the 15 year anniversary and it was actually from kind of an unconventional way. Brain injuries can happen in any way and falls are the number one cause of brain injuries, which is interesting. People don’t always think about that and so mine actually happened from a game at my church’s youth group.
When it was my turn to run, all the boys ran behind me and rushed the other team and my head ended up slamming into a cement wall and bounced off the floor a couple of times and so I was unconscious for a couple of minutes. I came to and I seemed totally fine but there wasn’t a bump on my head, there was actually a dent.
So instead of the swelling being released outside of the skull, the doctors think that my brain swelled and I seemed fine when it happened and then I kept declining and getting worse and worse and 72 hours after the impact, I couldn’t walk straight, I had blurry vision, I couldn’t hold conversations and it led to just this life of TBI.
[0:03:47.4] BP: I do like that you pointed out that it could happen everywhere because I think media’s really bad for making it seem like it’s only like sports and it’s like, no, lots of other places we get head injuries. Or it’s not just car accidents, though those are very common. How does it feel to have an exact date about when you got injured?
Because all of mine, none of them are tied to an exact date, this is when everything changed. They’re kind of just, you know, in the summer this year. Also, my memory’s really not that great, so I’d have to put them all on a piece of paper to remember the exact date.
[0:04:20.7] CB: That’s how some of my later ones are, yeah.
[0:04:23.2] BP: Okay, yeah. It’s like, I find it really hard. And once you had that one, that’s when everything started and did your other head injuries kind of make things worse or did you just kind of stay on the same course even though you got more?
[0:04:36.9] CB: So it was like, I would start to get better and then I would fall and hit my head again. I had undiagnosed vestibular system dysfunction. So because it wasn’t treated or diagnosed, I kept hitting my head and I had no spatial awareness. I was confused all the time and I knew I had a TBI and you asked earlier about the date, yeah, the date is weird because some years, I would feel okay. Sometimes it would be really hard.
I think I’m approaching this year as like, I have a date for the 15 year anniversary and I was 14 when it happened so like this year, I’ve lived more of my life with a brain injury than without and it’s just – it can be hard. The anniversary date, some years it had surprised me how difficult it was and sometimes I felt more grateful than others but yeah, it’s a difficult process.
[0:05:31.7] BP: That more without the more. I struggle with that because people always ask me, “What were you like before?” and it’s hard when you get injured young. Like mine started when I was 15 and it’s like, “Well, of course I’ve changed a lot because I was a teenager then and I’m not a teenager anymore,” and people are like, “Oh, well, you know, the before you,” and a lot of people that I helped deal with that were like, they really miss their old self but it’s really hard when you get injured young because you don’t always remember. Like, what was it like to not be ill.
[0:06:08.9] CB: Yeah and well, yours was like a series of concussions that kept compounding, right? Yeah, mine was a bit more drastic. So I definitely had like the old me and the new me thoughts because my first TBI was pretty serious. Like, I had to relearn how to get dressed, I had to relearn how to take a shower, like it was invisible in the sense that you couldn’t see it but it was also very, very visible in the sense of you could tell there was something wrong with me and my speech was slurred, my right side of my body was atrophying, I had really bad aphasia, my short-term memory was off. It was like, my mom describes it, it was like I was a small child all over again and so, it was pretty drastic.
I went from top of my class, honors, AP student to P student to not being able to do addition and it was like, very, very challenging because I got bullied in school because I went from this overachiever and played sports and did dance to not being able to walk straight. So it was like, very, very drastic in my case and that was a challenge for many years.
[0:07:23.6] BP: Yeah, that is quite the – yeah, mine was very different. Mine was, all of a sudden, I couldn’t get out of bed and then all the headaches and everything but all of mine, you couldn’t see. There was nothing. Unless you had a conversation with me and realized that I could tell you the same story twice in a row in the same conversation and not realize it.
[0:07:41.2] CB: Yeah.
[0:07:42.5] BP: Otherwise, nothing was really visible unless you really knew me. Like, my mom said she could always tell when I didn’t feel well but that’s also because we lived together and so it is crazy how much brain injury can completely change your life. Having to relearn how to do everything you already knew how to do is very frustrating because you feel like your recovery is kind of backwards.
It's not like you’re relearning anything, you’re relearning everything but you’ve done it all before. You knew how to write, you were an AP student, you knew how to dance, you knew how to get dressed. So it’s almost more frustrating to do it, I feel like, the second time around where when you’re a kid, it’s a little different to learn all those things.
[0:08:22.3] CB: Yeah and I really didn’t have self-awareness at the time. Like, I can now sit here and say, “Yeah, I had all these deficits and difficulties,” but at the time, I was in this chaotic tornado of confusion and like my mom helped me 24/7. I really didn’t have the self-awareness to understand and like, I looked fine so to say but it was just erratic behavior that it was super-clear like, in the most respectful way, my mom said it was similar to somebody who is on the spectrum, like, the autism spectrum, like a lot. Like in a more intense way of the sensory overload.
I would freak out in grocery stores, I like, I would literally scream or stomp my feet and I couldn’t handle noise, I couldn’t handle lights. It was very, very difficult for my family because yeah, I was just, I felt chaotic and out of control and I don’t even remember most of the first year.
That’s just when my memories start coming in and so, and at that time, it was 2007, like, if the concussion research that was out today was out back then, I probably would have been better in like a year, you know? Like…
[0:09:40.3] BP: It’s a lot different now.
[0:09:41.8] CB: What happened was the doctor just said, “Oh, go home and rest and do nothing,” and I kept getting worse and worse and worse and I was a vegetarian and now I know, like, my brain needed animal protein and so like my nutrition wasn’t right and so I wasn’t feeding myself the things that now I know are brain healthy but there was no way to know back then and that’s why I’m so passionate about helping people on my podcast, Hope Survives, which you were just on a couple of weeks back, because we just didn’t know.
[0:10:16.5] BP: It is crazy. I got told to go lay in a dark room.
[0:10:19.1] CB: Yeah.
[0:10:20.6] BP: For two years. “Here’s medication, go lay in a dark room.” Well eventually, I couldn’t get out of the dark room. Like, it is crazy how much it has changed and I’ve been, it’s about 10 years now, over 10 years now for me, and the science and the research is just overwhelming. When I go to conferences, I’m like, “Yay, everything you’re researching is all the things I had to be a guinea pig for,” yeah, this is great.
[0:10:46.1] CB: Yeah.
[0:10:46.4] BP: Like now there are actually going to be protocols on how to do all these and we can help people because there’s science to back it but I understand how your family feels as well because you’re kind of just going through it blind. You don’t really know what’s going to happen next, you don’t know how to fix it, but you did go through a lot. So what do you think helped you the most get through all of this?
[0:11:07.7] CB: Well, it was a couple of years before we even got connected with a support group. So like, we were super alone for a while and I think I attended a camp called Camp Cranium for kids with brain injuries when I was, I want to say, 16, 17. It was a couple of years after. I think it was like three years afterwards, and it was the first time I was around other kids, other girls my age that had had brain injuries and it was so freeing for me to realize that I wasn’t alone.
And I think that that knowledge really, really shaped me and helped me to learn how to advocate for myself a lot better. So that was part of what motivated me to start my support groups because I know what it’s like to feel super alone and I don’t want anyone else to feel that way. So I think finding the community was helpful.
I also, like, my faith is a big part of just my life and trusting in the Lord and knowing that God still had a plan for me even with a brain injury. That helped me to get through, and I started to write music and it gave me a new sense of purpose that I didn’t have before. I didn’t write songs before the brain injury and so that was like, really – it was just really therapeutic.
[0:12:29.6] BP: Yeah, I get the feeling alone part. It felt like that for a really long time and that was one of the biggest reasons I started what I’m doing too. It’s crazy how you can kind of feel like you’re the only person in the entire world. You know it’s not true but I feel like your brain injury almost makes you feel like you are the only one going through this.
And then when you’re dealing with like demons of depression and anxiety and all those types of things, it’s really hard not to keep feeling that way and get out of that like, “No, you’re not the only one, you’re not going crazy, there’s other people out there like this and they relate to you just as much as you need them to,” and so I think it’s great, all the work you have done.
Actually, how I found you was one of my girlfriends who had had a stroke at 18 had come across you and this was seven years ago and she sent me all of your stuff and said that it had been helping her so much and your community is so fantastic and everyone, you can learn more about all the advocacy work that Cristabelle has done, by checking out hopeafterheadinjury.com which will of course be on our show notes but with that, we’re going to take a quick break.
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[INTERVIEW CONTINUED]
[0:15:15.9] BP: Welcome back to The Post Concussion Podcast with myself, Bella Paige, and today’s guest, Cristabelle Braden. So we’ve been talking a little bit about how Cristabelle got hurt and this very long journey that she’s been on and I just wanted to ask if you had any tips.
We talked about being alone but tips for others who are going through this who it’s kind of been a long time because I find even for myself, I have years where I’m really good but there’s definitely moments where everything feels really dark and it’s hard to keep going. So do you have any tips for that?
[0:15:52.7] CB: Yeah, so chronic brain injury, chronic pain as a result of the brain injury, that’s a whole different thing than somebody who is in the acute stages and I think part of the struggle is you get weary and you get tired after so many years and you don’t want to give up but you also kind of lose hope that things are going to get better and you just get comfortable and settle into that pain.
For me, I think one of the biggest challenges has been hoping for improvement and healing and not giving up that things can get better and so when you’ve had it for so long, like, my best advice is always to get another opinion with somebody, a practitioner that’s up on current research.
Let’s say you had your injury before 2015 or around 2015. At that point I would say, if you haven’t seen a new doctor recently, I think you should go in and find a new concussion doctor that specializes in it to get somebody who is up on current research because what was in practice just five, six years ago is totally different than what’s in practice now and you might be able to find more treatments now that you couldn’t find before.
So that’s like the practical side of advice. Now, the emotional side of advice is there are going to be seasons, you have to think about life in terms of seasons. We have summer, fall, winter and spring in our world and I’m looking outside right now and the leaves are changing into fall and the world operates on seasons and I’m a person of faith and so as a Christian, like, I think about how God created seasons.
There’s a verse in Ecclesiastes that says, “Everything has a season, everything has a time,” and so if you feel like you’re experiencing a winter season, where you’re in a lot of pain and you’re struggling and you just want to hibernate, I want to encourage you, it’s okay to do that. You can live in the winter, just don’t stay there forever because winter has to turn into spring. But it’s okay to feel those things right now.
So I just want to encourage anybody who is struggling to keep a mindset of seasons. Like, it’s not going to be forever, this might be how it is right now and you might have to face the reality of what you’re going through today but continue to have hope for spring to come tomorrow or if you’re in the fall and you feel like things are declining and it’s like, it’s okay.
Sometimes that happens and you are so much more than your symptoms and your injury and this is just a season that might be a little hard for you right now or more than a little hard. It might be really, really, really devastating or challenging or extremely painful but I just want to encourage you that first of all, there are practical things you can do.
Find a practitioner to help you, get on the nutrition plan, figure out something to help your brain health and then second, approach life in seasons. I used to feel like I’m just going to be like this forever and that things were never going to get better and I sunk into that and then I thought, “I just have to make the most out of it. So I’m just going to have limited cognitive function for the rest of my life. I just need to figure out how to plan and pace and do it appropriately.” And now, I’ve come to a place where I said, “You know what?” I’ve learned I don’t have to live like that. Like, my brain is capable of healing and that mindset shift has really transformed my life.
[0:19:36.5] BP: I think that is amazing advice and I like the advice to go see doctors because I always say, “Try another one.” Because they’re still recommending things that we’ve mentioned that are bad ideas. Go find somebody else or at least find a doctor that’s willing to listen to you and the research that you’ve done as well because it’s hard in certain communities to find the help that you really need.
But even if you can find a doctor that’s willing to listen, or a therapist who is like, “I’ll do the research with you. Like, you bring ideas and we’ll go over them together,” and even that can make a world of a difference because I still do therapy. I go in waves where I’m like not doing anything and then I’m like, “Oh, eye therapy for a few months, that sounds like a good idea,” And then I do that or physio or all those types of things. I think it’s so important. And nutrition, I’m always trying different things and I’m like, “Maybe this will make me feel better,” and it’s always worth trying.
And I like your seasons idea. I always say that just because today is terrible, doesn’t mean tomorrow has to be and that really changed my perspective a lot because I found, say, I’d have a busy weekend and kind of push my brain a little past what it could do then Monday would be bad.
But then the stress and the anxiety and all the depression would come back that Monday and then I would make it drag out till Friday. I would just be so down on myself that I was in so much pain and be like, “Oh we’re going backwards,” but I started to learn that, “Okay, we overdid it. Monday is terrible and we’re going to accept that Monday is terrible and we’re going to maybe do nothing today or have a quiet day but that doesn’t mean tomorrow has to be like this. Maybe it won’t be.”
So having that hope like you said, which is what you’re all about, for the next day to be better can make a world of a difference but it is also good to accept the feelings. As my mom always says and we always say here, “It is okay to have angry days. It is okay to let your feelings out, just remember to let go of them sometimes too.” But I love your advice.
And so how are you doing now? So you’ve been through a lot, it’s been almost 15 years, which seems like a crazy amount of time but such a short amount of time I am sure at the same time. Where are you at now?
[0:21:54.6] CB: Yes, so I’ve had a couple pretty major setbacks in the last couple of years. December 2019, I had a concussion where I fell down the steps and that really set me back. That brought on a whole slew of symptoms of my speech learning and it exacerbated everything in a way that it hadn’t been that bad in a while and so that concussion in December of 2019 really set me back.
Then I was just starting to feel a little bit better in March and then the pandemic happened and so it was like, it was just a lot. And then I got COVID in January 2021 – no, no, no, this year, January 2022 I got COVID and that caused neurological problems and a long COVID issue. I felt like when I had COVID, I felt like it was another concussion, that’s how I felt. My mom was like, “Are you sure you didn’t hit your head?”
Like my whole family got it and they all recovered fine but because my brain was already functioning at a lower level I guess, it really set me back. So it was basically the same as a concussion for me and that was really, really hard, and now some of the research is showing that COVID affects your autonomic system and I have been diagnosed with dysautonomia and so that makes a lot of sense as to why I couldn’t handle that.
So that set me back at the beginning of this year. I got some treatment. I’ve seen Dr. Jeremy Schmoe at The Functional Neurology Center and I went out in April – was it April or May? It was right around then and I did hyperbaric oxygen in addition to some of his other treatments. The interesting thing was my vision and my vestibular system have improved tremendously. For the first time ever I tested normal on my vision and I have been working on vision exercises for years.
So that was like extremely encouraging for me and my balance is a lot better and then this summer a couple of months ago, I took the Dutch test and I found out my hormones are completely off balance, which can happen from brain injuries or from dysautonomia.
Dysautonomia is dysfunction of your autonomic nervous system, you basically get stuck in fight or flight and that happens after brain injuries for many people. But when you are stuck in fight or flight, you are producing too much cortisol, which can cause your hormones to get off balance and I had not known this before. So that’s been really enlightening and I am on supplements and I have a treatment plan. So that’s kind of a long winded answer but I’ve had a lot of setbacks in the last couple of years.
[0:24:29.4] BP: It’s a good one.
[0:24:30.0] CB: But where I’m at now is I am hopeful and I am improving and everyday every bite that I eat, I’m really, really aware of my nutrition. I am gluten-free, dairy-free and I eat basically no sugar. I just have natural sugars sometimes and that’s changed my life. Gluten-free two years ago completely eliminated my migraines. It’s been really wonderful. And so I am taking steps towards improvement and I am thankful for the direction of the practitioners that I’ve seen that have been able to help me.
[0:25:06.2] BP: Yeah, that is – it’s a great answer. It’s okay, you can talk for 20 minutes, it’s all good.
[0:25:12.0] CB: That was not quite 20 minutes.
[0:25:13.3] BP: I’m just fucking with you, it was great. The COVID, I actually somehow have not got COVID, I don’t know how. My entire family has not got COVID, really weird.
[0:25:23.9] CB: Aren’t the restrictions a lot more intense in Canada though?
[0:25:27.3] BP: Yeah, they are, but like my sister’s kids got it, I had friends that got it, my girlfriend had it and we had a sleepover and I didn’t have it and she was like, “What is going on?” I was like, “I don’t know.” It’s like we’re just going to carry on. But you mentioned that it affected you a lot more and actually every time I get sick, I’m affected more. I find my headaches get a lot worse, all these things start going and my favorite explanation for it is like a sunburn.
So all of your nerves are kind of still on fire because they have been damaged before, so it doesn’t take much to hurt them more. So if you already have a sunburn and then you go out in the sun, your skin is going to be way more affected than somebody who doesn’t. So I just find it's a really easy way to understand that you’re not – you are just as smart as everyone else, everything else can feel the same but because those nerves and everything is so much more heightened after all the injuries you’ve had, it doesn’t take much.
[0:26:22.7] CB: Yeah.
[0:26:23.1] BP: I find, like for me, it doesn’t take much for me to be like, “Oh well, I guess I am going to bed.”
[0:26:29.2] CB: Yeah, I agree. It’s always been that way for me since my injury like any sickness has hit me worse but COVID was different.
[0:26:36.5] BP: Oh no.
[0:26:37.3] CB: Something about how it attacks the nervous system. I’ve gotten the flu before and that just really knocked me out as far as like fatigue and stuff and headaches but COVID, it felt like a concussion. Like I was forgetting words and there’s been a lot of research about COVID and the brain and it’s basically causing people to have like post-concussion syndrome.
[0:27:00.5] BP: I saw that, yeah.
[0:27:01.5] CB: Yeah, and so for somebody who already has concussions, I mean, maybe if you are listening to this and you had it, maybe this will validate how you felt. I feel like if you have already had concussions and your brain is a little bit more susceptible, you might have more of those issues but I am feeling better now. I am nine months, ten months later, I had to get some extra treatment but I mean, don’t be discouraged by that if it happened to you. Like just take it in stride, you know, re-injuries and setbacks happen. It’s seasons again, right?
[0:27:31.9] BP: Yes, it is.
[0:27:32.9] CB: So seasons of hope.
[0:27:34.9] BP: Yeah and I love that you mentioned the autonomic dysfunction actually two weeks before this goes out, we have a guest, Dr. Vincent Schaller, who actually speaks on dysautonomia and all about how that works and then the hormones, I’ve actually done a lot of hormone treatments myself. Pituitary dysfunction is very common after head injuries. Well, not very common but a lot more common than people realize. There are about four different types of main hormones that can be in error but you actually have to do the right tests.
[0:28:06.3] CB: Yeah.
[0:28:07.0] BP: I talked to someone the other day about that. They said, “Well, all my blood work keeps coming back clean.” I’m like, “Well, what boxes are getting checked off?” Because if you just get a few, like there’s so many things on the sheet that a doctor could check off for it to get tested. So you have to really ask the right questions and hope that they understand what they are looking for and that can really help you.
But I think it’s really great that you found that because so many people don’t realize about their hormones until way later.
[0:28:32.9] CB: Yeah, I was going to say about the blood work, also a lot of doctors just say, “Oh, it’s within a normal range,” but it could be like teetering on the edge and so a functional medicine practitioner is going to look at it from a different lens and that’s who I’ve been seeing and it’s been really, really helpful. It is actually a chiropractor that is certified in functional nutrition and she’s local here. She has been testing my hormones as well and we did the Dutch test and so I had never, believe it or not Bella, I’ve gone to so many doctors, like hundreds.
[0:29:10.2] BP: It doesn’t surprise me.
[0:29:11.6] CB: And not a single one tested my hormones even when I told them my periods were irregular.
[0:29:16.0] BP: Oh yeah.
[0:29:16.5] CB: They still said, “Oh that can happen when you have a brain injury,” and they just wrote it off as like whatever.
[0:29:24.7] BP: Mine was, when I’d get my period, so I started realizing that every month I’d have a terrible week and like a week where depression set in, everything set in. I couldn’t function, I had to write off a week of every month of my life and it just kept happening and then I started realizing that it was kind of working with how my birth control pills were working.
I was like, “Okay, well it is the week I am not on it,” and it was the hormone drop and then I talked to my doctor and then we’re like, “Okay but this isn’t normal.” You shouldn’t go to the point where you’re like okay to where you’re in a hospital bed every month.
[0:30:01.0] CB: Oh yeah.
[0:30:01.4] BP: Like something is wrong here, so that’s how we started testing for hormones and seeing and like you said, the doctor has to know what they are looking at. For example, one blood test can say this but you have to look at them in relation to each other too. Like, “This is 15 and this is six. Oh okay, well, these need to be like – this shows that this is off,” like all those types of things.
[0:30:25.8] CB: Exactly. Yeah, it’s so nuanced.
[0:30:28.5] BP: I’m anemic as well. It’s so complicated and I think a lot of times doctors are like, “Oh, well, nothing came up in the red flag,” like you said, like where the system just tells them that it’s wrong and then they carry on and I don’t think a lot of primary care doctors know what to do about hormone deficiencies anyways.
[0:30:46.6] CB: Mine was not even tested even when I told them that it was off and I have never been on birth control my whole life, never.
[0:30:54.1] BP: Okay.
[0:30:54.7] CB: My cycle was irregular but they were like, “Well, it’s still coming, right?” and I’m like, “But it will be like 30, it will be like 20 something days, and then it will be like 50 something days,” and it’s like, “Yeah it is still coming but it’s like very, very messed up,” and they just said, “Oh, a brain injury can cause that.”
And here is something I want to tell the listeners. I used to think that brain injury was enough of a root cause. I was told, “Your brain injury caused this,” so I thought brain injury is the root cause but no. Brain injury can just set off other issues in your body, in your system.
So a brain injury, that could have set off something but there is something else going on if you are having any sort of symptoms and so it has been so freeing to know and I finally got a practitioner that was like, “Okay, let’s test them,” and we did the Dutch test and it was not cheap but it was worth it, oh my gosh, so worth it. It came back and like everything was in the red zone.
I would have said like 75% of the test, it has that green, yellow and red, 75% of it was red. And that was just like a month ago, two months ago. Now I am on a specific supplements and specific diet plan and I’m like, “All right, I feel like I am doing something,” and the doctor looked at the test results and said, “You’re probably really, really tired every day,” and I was like –
[0:32:24.2] BP: Oh, yeah.
[0:32:25.3] CB: “You can see that on that result?” It was so amazing because I thought that my tiredness and fatigue was brain related only but now, to get validation that it’s actually my hormones and no amount of neurological therapy is going to help this. It made me feel so much better because I’ve spent so many years doing neuro therapies and that’s why it didn’t help because I wasn’t treating the right thing and so it’s crazy. It is crazy but it’s so good everything that’s out there now.
[0:32:58.2] BP: I think it’s amazing how much. And even if you tried five years ago, they were probably were like, “What?” Because the science has changed a lot but it is wonderful that you found that because it helps. Like I have chronic fatigue from both the head injury and things like that and I am also anemic, like crazy anemic, as in like I have to get infusions so that I can walk around.
So it is important to check all of those things because if we just keep blaming our injury, then we are not really treating what’s going on. That’s why I always tell people to focus on your symptoms rather than just, “I have a concussion,” or “I have a brain injury and that’s what I am treating.” Focus on what is wrong because a concussion and a brain injury can be so not general but everyone’s symptoms are so different.
Everyone’s situation is so different, so if you start focusing on the problems that you are having and the symptoms and you start treating those individually and then all together in a different way, then you start to actually feel better. Like my headaches, we just focused on my headaches forever but one of the problems was I couldn’t read and that’s because my eyes were not okay but nobody mentioned my eyes, like ever.
Because I’d go to the eye doctor and I’d had glasses my entire life and my vision wasn’t changing that much, so they wouldn’t say anything and I was like, “But I can’t read, like I can’t read a book,” they’re like, “What do you mean?” I’m like, “I cannot read.” Like I would read it and I couldn’t remember it, or I’d have so much eye pain trying to focus on the words and all these things, but it was the headaches.
So I just kept giving – they just give me meds and so finally finding answers for all these things is such a good feeling and very validating when you have been struggling for a while. So I think it’s great that you are getting that figured out and it just proves that you have to keep trying because things keep coming out. That’s the other new thing that’s really important to remember that research is continuing.
It’s like 10 years ago we were on the flip phone and now we’re on the iPhone and it’s the same way for research and you have to remember that that’s how fast its improving and that means that next year when you go to the doctor, they might have a whole new idea for you because it just came out and that’s okay because at least they are coming out.
[0:35:16.5] CB: Exactly and I also think it’s really important to know or for people to know that you are not going to be able to do it all at once. So like five years ago, my vision was really bad. I was in vision therapy and I was in vestibular therapy because I literally struggled with walking around and my balance. I couldn’t stand. So like, I sing on the worship team and when we would pray before service, I would stand there and I would close my eyes to pray and I would fall over. I couldn’t close my eyes to pray.
[0:35:45.6] BP: I fell over too.
[0:35:47.1] CB: I’d have to keep my eyes open. I couldn’t close my eyes to pray in church.
[0:35:51.6] BP: For your balance.
[0:35:52.5] CB: Yeah and so it’s like, I can’t even pray in church, like come on.
[0:35:55.5] BP: You’re just awkwardly standing there.
[0:35:57.1] CB: Exactly. I’d have to bring out a stool and sit on it. And so it’s like, you have to put out the biggest fire, right? So at that point we were addressing that. Now, before that it was like, early stage it was like, “Okay, can you just get yourself dressed in the morning?” you know what I mean?
So like at that point, there was no way we could have addressed the hormones even though they were off back then because I wasn’t in a place to deal with it and so I feel like my recovery has been in seasons as well and so just like knowing that like, hey, if you’re just trying to stay upright like yes, it is going to be good to get your hormones tested but don’t stress yourself out over it. Do it when you’re ready and of course, the earlier it’s going to be better because you are going to be in less pain, you’re going to figure out what’s going on but it is not worth overstressing yourself.
So just kind of set recovery goals as to like maybe the most pressing down to the least pressing and just do them one by one. Don’t overstress yourself trying to focus on every single aspect of your recovery because that might be too much to do all at once.
[0:37:08.2] BP: Oh yeah, you have to do one thing. Well, not really one thing at a time but unless you want to live as a full-time patient, which you already have to kind of do, it is almost impossible.
Like my headaches were a huge problem or when I stood up and closed my eyes I’d fall over too. So like those types of things or my mental health was something I addressed probably too late but all these types of things, sometimes they are stepping stones on how you can get there because you can’t just jump because it doesn’t really work that way.
[0:37:40.2] CB: Especially if you are trying out a bunch of medications, like there might be side effects, you don’t know. My headaches used to be really bad, like in the bed all the time for years and so I tried so many headache medications through my neurologist. Like I tried the shot, the Ajovy shot and it got rid of the pain but I felt like it made all the rest of my symptoms worse and my hair fell out.
Then I did Topamax for many years and that caused my hair to fall out and I didn’t know that it was causing other cognitive issues because nobody told me about side effects. So like, you know, I tried all these medicines and got off of them and eventually, I did magnesium and then I was like, “I’m just going to try going gluten-free,” and I was dairy-free already because of digestive issues.
Because I also didn’t know that the gut and the brain were connected. Now that I know that, it’s helpful, but like ever since I went gluten-free, my migraines disappeared. It’s insane how much that changed my life.
[0:38:39.8] BP: Yeah and it’s great and I know all the meds. I did Aimovig this summer. I couldn’t think. I would sit in front of the computer and just get nothing done and I would talk to people and I would just feel like I was in a fog and I’m like, “Okay, I feel like I am going backwards now,” and I still had headaches. So I was like, “Well.”
[0:38:59.2] CB: Yeah, I had the Ajovy, which was similar. I couldn’t function on it.
[0:39:03.1] BP: Yeah, same kind of thing.
[0:39:04.3] CB: Yeah.
[0:39:04.8] BP: Or Topamax is one that I’ve tried, that’s the one I lost a ton of weight on and got really sick and got setback for two years. I say try them because everyone’s circumstances are so different. My partner and I were on the same medication once, we both had concussions and I had every bad side effect and he had none. So you know, it really depends on your body.
There is so much to it, so it is always worth trying, just keep track of what is going on and try to notice the little things because they have a lot of side effects that people don’t even realize. My doctor didn’t notice a lot of the side effects until I started listing them. I’m like, “Okay.” I was like, “Now, I’m screaming in my sleep.” They’re like, “You’re what?” I was like, “Screaming in sleep, night terrors have started.”
They’re like, “What are you talking about?” I was like, “Well, I didn’t have night terrors before this and now I am screaming apparently in my sleep.” So I am blaming the med. So I just wanted to ask, is there anything else you would like to add before we end today’s episode?
[0:40:02.5] CB: Yeah, I mean, thank you so much for having me on and thank you for all the work you do to help people with concussions and brain injuries. I think the last thing I want to say is just, you are unique. You have a special place in this world and your brain injury didn’t take that away from you. Your struggles are shaping you and growing you and some days might feel unbearable but know that there is a purpose. God has a plan for your life, you can’t always see it in the hard days but don’t ever give up and if you feel overwhelmed, talk to somebody.
You know, don’t hide and run away from other people because that’s a really easy way to start to really get more depressed and I have done it because you feel like nobody understands you but if you can just have that one person, even a therapist or a friend or somebody from an online support community or a family member, just reach out if you’re struggling. Yeah, don’t ever give up hope.
[0:41:05.6] BP: Well, I just wanted to say thank you so much for joining and sharing some of your advice and your story.
[0:41:11.7] CB: Yeah, thanks so much for having me.
END OF INTERVIEW]
[0:41:16.9] BP: 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.
[END]
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