The Invisible Reality of Brain Injury | Dr. Melody Merati

What happens when your brain injury doesn’t show up on a scan… but changes everything?

In this episode of Rupture: The World of BestGuessistan, Wendy speaks with neurologist and neuro-ophthalmologist Dr. Melody Merati about the hidden reality of traumatic brain injury.

We’re told concussions are temporary. That we’ll “bounce back.” That if imaging is clear, we’re fine.

But for 10–30% of people, that’s not what happens.

Dr. Merati breaks down what’s actually happening in the brain after injury. Why symptoms don’t always match severity. Why dizziness, vision issues, mood changes, and sensory overload can persist for years. And why so many patients feel invisible inside a system that can’t fully explain or treat what they’re experiencing.

This is a conversation about:

• The limits of diagnosis and imaging
• Brain hypersensitivity and “irritability”
• Why recovery timelines fail so many people
• The emotional and psychological impact of not getting better
• How treatment actually works (and where it falls short)
• And what it means to shift from fixing to living

This episode is also about something bigger. The moment when you realize your life may not go back to what it was. And how to move forward anyway.

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Transcript

SPEAKER_02 0:00

Welcome back to Rupture, the world of Vesgesistan. I'm Wendy Lurie. Dr. Melody Marathi is back. And today we're going to be talking about the ten to thirty percent, those of us whose concussions don't resolve within ten to fourteen days. Because when you fall outside that timeline, everything changes. Not just the injury, the expectation. And if you're part of that group, you are not alone, and you are not the problem. Dr. Murati is a neuroophthalmologist and my concussion neurologist. And welcome. Thanks for coming back to Rupture, Doc. Thanks so much for having me again. No, it's it's really to be able to continue this conversation is of great service, not just to me, but to our audience. So the last time we talked, we sort of talked generally about TBIs and what's going on in the brain. And I thought for this conversation, we could focus more narrowly on I'm a member of this group, the 10 to 30% of people who get a concussion and don't recover in 10 to 14 days.

SPEAKER_00 1:22

Yeah, absolutely. You know, it can be extremely stressful for those patients because they're told, you know, this is the normal. And so when someone doesn't fit in the normal box, you're you're kind of left out there wondering, like, why am I not getting better? And so I often, you know, and I often run into those patients all the time where they just they lose a lot of hope because they were told, oh, you know, this is how it's supposed to be. And oftentimes they they think that they're going crazy because they're like, why am I not getting better? We do, so those patients oftentimes we do know there's certain predispositions that they don't get better in a certain period of time. And so, you know, if they have the history of migraines or if they're having, you know, multiple concussions in the past, we know that those patients have a lot harder time to recover in that time span than patients who don't have that history of concussions, migraines, if they don't have any injury to the brain before. So often we also know that there are other components that lead patients to have a more difficult time for recovery, including, like we talked about environmental factors, but also, you know, there's genetic predisposition. And then also the older population has a little bit more difficult time recovering. I have a lot of older patients who've had a concussion and they're still struggling for months and months and often for years, too. And so it can be very difficult for those patients, but you know, at a certain point, I think as providers, we need to just we need to stop telling patients that you're definitely going to recover in this period of time. Because I think that's also a problem, too, the providers telling patients that.

SPEAKER_02 2:54

I think so too, because it's establishing an expectation. And what you were saying before about patients getting frustrated, I think and I think that's absolutely true. Another thing I think patients feel is guilt. Yeah. Because if you're told you will r recover in this period of time and you don't, you feel like a failure. This isn't the problem. I'm the problem. I can't make myself better. And just that that extra layer of guilt. Absolutely. Especially in the early days when nothing makes sense.

SPEAKER_00 3:17

Yeah. I mean, you know, in high functioning patients, patients who, you know, they ha had a job before all of this and they can't function at their job, they feel a lot of guilt. They can't provide for their families anymore. They feel a lot of guilt about that because they used to be the sole provider for their family and now they can't do that. Yeah, it it's it's it can be very problematic. And I think the guilt is is something that I see a lot, especially, you know, patients breaking down about it because it's it's coming to a head at a certain point. Why am I not recovered in, you know, six months? I was told I was going to recover in in 14 days.

SPEAKER_02 3:50

Which is feeling like you're responsible for something that you actually have no control over. Yeah. So you were mentioning the some of the factors that make it likelier that someone will be in this 10 to 30% group, prior concussion, migraine, age, all that. Is there has that ever been quantified? Like how much likelier is someone to have this long-term issue if they've had those, any of those sort of preexisting conditions?

SPEAKER_00 4:14

Yeah, I mean, they've done a lot of research on this, but you know, I don't think there's a specific number that gives us like a quantification about that. We do know, like, if someone presents on the table with like multiple symptoms, they found that, you know, having multiple symptoms put you puts you like 20% more risk of having a longer recovery period. But again, every person's so different. And so it's hard to say, oh, no, about 5% of the time this will happen because we know that's not true in the real world in clinical practice.

SPEAKER_02 4:44

But you said something about the symptoms of that. So do certain symptoms indicate likelihood of this persisting?

SPEAKER_00 4:50

Yes. You know, migraines is a big one, and oftentimes migraines is something that's the most difficult to control after a concussion, but also people presenting with memory loss, they're having a lot of concentration issues, they may have a lot of trouble sleeping, fatigue, dizziness, dizziness is a huge one. Dizziness can be very, very difficult to control after a concussion. But, you know, and I'm sure we'll talk about this later, but the therapies can can oftentimes recover. But you know, the more the more symptoms patients present with, oftentimes the the longer it's going to take for them to recover than let's say somebody who just can't comes to see me with just, you know, oh, I'm I'm just symptoms. Yeah, just have I'm just having a bit of visual problems and that's it, nothing else.

SPEAKER_02 5:29

So quantity of s symptoms makes a difference.

SPEAKER_00 5:32

Yeah.

SPEAKER_02 5:32

And then it sounds like dizziness could be a predictor of the longer. What uh are there any one other ones that indicate sort of likelihood of persisting?

SPEAKER_00 5:41

Yeah, so you know, I think the there's a ton of post-concussive symptoms that we often see in the clinic. Here's the thing, because it's so difficult to get access to healthcare, some sometimes I'm seeing those patients months out after they had the concussion. And so the symptoms that they're telling me that they initially had after the concussion, those have gotten better. But oftentimes those include the mood changes, dysregulation, the, you know, again, the pain that comes along with it. They may have visual dysfunction, they may have a double vision, or they just might feel like they're focusing, they're having focusing issues. And so there's a vast majority of, you know, physical and mental symptoms that are associated with concussion and post-concussive symptoms. And so getting a good baseline of what someone had before they had the concussion and then what are they like after the concussion? So I can kind of have an idea of where they are in the recovery process and how how difficult it is for them to recover. So getting the idea do they have history of depression, do they have a history of anxiety, is that going to play a role in this too?

SPEAKER_02 6:42

And do those play a role if they have histories of those of things like anxiety and depression?

SPEAKER_00 6:45

That yeah, I mean, I I think, you know, that plays a role into a lot of things, but especially in concussion, because somebody who has a let's say a history of severe depression or severe anxiety, the concussion can certainly trigger those symptoms even more. And so, you know, if someone is has a lot of anxiety about their concussion and post-concussive symptoms, then it's going to be harder for them to respond to treatments because they, you know, certainly can provoke anxiety and then provoke depression too. And so if somebody's not, their mood is is problematic.

SPEAKER_02 7:13

Yeah. No, that makes a lot of sense. And I can definitely relate to the anxiety part of it because I had I had managed, I would call it managed anxiety before, but post, it's it gets triggered by just about anything. It's like it's it's much everything's much more sensitive.

SPEAKER_00 7:27

Yeah, exactly.

SPEAKER_02 7:28

I wonder about the headache thing for a second, because we're talking about migraine. Is it common for people who go through this who don't have a history of migraine to develop migraine from the TBI?

SPEAKER_00 7:40

Yeah, I have a lot of patients who've developed headaches after a TBI, um, who never had history of headaches. It's a little bit more common though to have the patients who have history of migraines get their their headaches get a lot worse after their concussion. But you know, there's a small subset of patients who develop headaches after concussion. And I know for you, you did have headaches before your concussion, but yours certainly got way, way worse.

SPEAKER_02 8:02

I've had migraine since I was 17.

SPEAKER_00 8:05

Yeah. Yeah.

SPEAKER_02 8:06

And it definitely made it worse. But I do find that the some of the medications to manage migraine, like the like the things to prevent it, which reduce the auras, actually do sort of they they don't help the concussion pain because the pain, but for me at least the pain is in layers and I can tease apart which pain is which. So they'll they'll deal with the migraine, but they won't deal with the concussion pain.

SPEAKER_00 8:26

Yeah, yeah. Right.

SPEAKER_02 8:27

So to me, those are distinct, but they may not be in everybody.

SPEAKER_00 8:30

Yeah. And you know, that's interesting you say that because those medications are specific to migraines. And so that's that's they work. Yeah.

SPEAKER_02 8:37

Okay. So I want to go back a little bit to sort of visual system issues, because that's your area. I mean, among your m many areas of expertise. So the visual system. So we we talked about this on on previous podcasts, but a lot of people don't necessarily recognize that some of the symptoms they are experiencing can be a result of the visual system. They don't necessarily like I mean, the dizziness, for example, like may or may not seem connected to that. So how often are visual or ocular motor issues a hidden contributor to symptoms like headaches, fatigue, into overload, dizziness, roll of vision?

SPEAKER_00 9:11

Yeah, the majority of the time, actually, some patients will come to see me and they'll say, I have distinct double vision after my TBI, after my concussion. And so when they come to see me with those visual symptoms, then I tease out, okay, is there a crani that's involved? And a lot of times we see cranifore palsies involved. Yes. And so some patients will not have, they will not have distinct double vision, but they will just say their visual world does not feel right. Something feels off vision. And then when they tell me that, they say, and you know, focusing can be very problematic because then it causes eye strain and that triggers headaches. And so teasing out, okay, do they have, you know, a convergence insufficiencies when the eyes don't, you know, they're not coming in to see a near target from the concussion, or do they have a cranial nerve palsy from their their concussion? And so, yeah, there are there are the majority actually of patients who come to see me post-concussion, and it's probably because I'm a neuroophthalmologist, but they'll tell me that their visual world feels off. And so it's up to it's our job to figure out what's going on.

SPEAKER_02 10:13

So that makes a lot of sense and is very familiar. So besides the double vision, which can be from the fourth neuropalsy, what kind of other visual symptoms do you most commonly see in patients with this?

SPEAKER_00 10:24

Yeah, so reading can be really troublesome because their brain is not no longer telling their eyes what to do anymore because of the concussion. So looking at phones, computer screens, people will have sensitivity to light after their concussion. So many different visual symptoms are associated with concussions. And you know, like we talked about convergence insufficiencies, multiple cranial nerve palsies can cause issues with the vision, difficulty focusing. So there's a there's a vast majority of visual symptoms because the vision is uh so related to the brain.

SPEAKER_02 10:55

Well, and you were saying I think did you say the brain was not telling the eyes or the eyes were not telling the brain, or is it both?

SPEAKER_00 11:01

Yeah. Yeah, so the the what happens is the the brain has difficulty in controlling the eye movements. So that from the mechanical stress of a concussion can cause issues with your vision. And oftentimes patients will have difficulty after the concussion with, you know, seeing fast moving cars because that visual input is too stimulating for them. And so that triggers, you know, dizziness. Um, you know, seeing subways move being on subways can trigger a lot of vestibular symptoms. You know, the list goes on and on, but our visual input is so important for the, you know, because if you're seeing double vision, you're gonna fall. You're gonna have dizziness, you know, you're gonna have difficulty focusing, you're gonna have headaches from, you know, as a subsequent, you know, problem from that.

SPEAKER_02 11:43

So Yeah, no, there's still there's still a lot of TV with fast-moving things that I have to watch like this, and it's three and a half years later, and that doesn't seem to have improved. Okay, so we're gonna go to persistent symptoms because we started talking about that. Uh and let's just go deeper into that. So, like what persistence actually persistent symptoms actually look like like in this 10 to 30 percent. So visual, we were just talking about the stibular, so the dizziness, which a lot of which has to do, you're saying, with vision.

SPEAKER_00 12:09

Uh-huh. Yep, that's right. And then the the dizziness can also be associated with the there's small crystals in the inner ear. And so if they from the mechanical stress of a concussion get dislodged, and then it can cause it.

SPEAKER_02 12:21

So is that the one that's like cured by the Eply maneuver? I think we we had to DIY that at home. But that so they can get dislodged from a concussion and lead to the dizziness.

SPEAKER_00 12:29

Correct.

SPEAKER_02 12:29

Right.

SPEAKER_00 12:30

Oftentimes that type of dizziness is way more severe than, you know, dizziness that's coming from like a central, like a mass or tumor in the brain. And so those patients who have the dizziness from like a crystal that's dislodged in their inner ear can it can be, you know, vomiting profusely, the rolled is spinning on them, moving their head into certain positions causes severe symptoms. And so that can be from a concussion as well.

SPEAKER_02 12:54

Wow, because it wasn't hard enough. Cognitive issues, definitely. What kind of cognitive issues do you see?

SPEAKER_00 12:59

Yeah, cognitive issues that I will see are is brain fog. People have a lot of brain fog from you know, a concussion. They might also have problems with their mood. You know, they're they're just they're they no longer find, you know, but that comes along with the history of depression. They they have, you know, they're worsening depression and anxiety. So it all really plays a role together. And oftentimes if if someone is having difficulty with with a lot of mood issues, I'll refer them to psychiatry, our psychiatry colleagues, because you know, at a certain point I think medications can can help with that, along with other therapies too. Yeah, mood mood.

SPEAKER_02 13:34

It it's interesting because I never I I did not have a like a history of like light anxiety and no depression.

SPEAKER_01 13:40

Yeah.

SPEAKER_02 13:41

But I have found that it is harder to regulate mood and emotions post-TBI, like something I that was never a problem before. I I solved it by working out. Yeah. But it is definitely more of a challenge than it used to be.

SPEAKER_00 13:52

Yeah, I mean, and if you've it's it's if you think about it, anyone who's in constant pain and constant dizziness, constant visual, it's like you know, if you don't have mood problems from that, it's it's it would be surprising. If you're dealing with these symptoms 24-7, it's can be cause a lot of issues, but it's not unexpected.

SPEAKER_02 14:10

No. No. The headache and the the migraine. I wanted to ask this only because like when when I go and like talk to like when I'm engaged in a conversation with a community, say with the the Reddit TBI community, and people are talking about their symptoms, pain doesn't always come up. And even when I've talked to other people and interviewed other people for this podcast, three of them come to mind. Not a single one mentioned the headache. They all talked about the other symptoms. And I was like, wait, wait, I know I can't be the only one who has the headache, but is it more common to have it or not to have it? Because this little anecdot I'm getting is a little confusing.

SPEAKER_00 14:46

Yeah, and you know, it is common to have headache. And I know this because I treat it a lot post in post-concussive patients. I treat it in 90-year-olds, I treat it in 20-year-olds, so really doesn't matter how old you are, but older people do have, you know, a worse time with recovery as far as duration of recovery than younger people.

SPEAKER_01 15:05

Right.

SPEAKER_00 15:06

But yeah, no, it is it is common, you know, and and it might just be they've been able their brain has been able to their hypersensitivity of their brain has been able to regulate the pain better um than other people. Um and you know, we know that women have a harder time with my brain's host concussion. Potentially it could be from the sheer with the sheer force of a concussion, women oftentimes will have a less of a neck mass, they'll have less muscle. So when that because of I'm reliving mine right now, yes. Our anatomy is different in females compared to males. And so, you know, does that mean that you know when we have a concussion, if it's a pretty large impact, our head is rocking back and forth harder than like a male? It's possible. But yeah, no, I I treat a a lot of migraine and headaches post-concussion. And you know, I would what I would say is I s in my clinical practice I do see it more in females compared to males, but I do treat males too. But yeah, I mean, I think in those patients, maybe they've found treatments that have helped for pain their pain aspect of their migraines. Yeah, that just kind of goes to show it's really dependent on the pa the person.

SPEAKER_02 16:12

Right. But but even separate from the concussion, I mean, incidence of migraine in women is higher than in men, right? I mean, I thought men men get it as in the form of a cluster headache.

SPEAKER_01 16:21

Yeah.

SPEAKER_02 16:22

Right.

SPEAKER_01 16:22

Yeah.

SPEAKER_02 16:22

We we have a lot of expertise in the family on that. My my brother gets cluster headaches. Like I get the individual one-off migraines, but Okay. We're deeply experienced. Yes, I know you guys are. What about fatigue? I talked to someone recently who said she could not stay awake after her head head injury. She would literally fall asleep while she was sitting on the phone.

SPEAKER_00 16:43

Yeah. You know, fatigue, uh I do see, I don't see as often as I do the other symptoms post-concussion, but I think fatigue also comes along with your brain is trying to function so hard to, you know, doing the normal things that you were doing before the concussion that that your brain just needs breaks, longer breaks. Um and so that, you know, to some to her might be she needs to take frequent naps or rest, rest period increased rest periods. And I think that goes along too with, you know, patients who are on the computer for a really long time after trying to do their normal things, but they can't because that's the bright light. So I think it's the symptoms of the concussion that really make the fatigue a lot worse. But everything's interrelated.

SPEAKER_02 17:24

So look the sort of connected one with that one is sleep disruption.

SPEAKER_00 17:28

Yeah.

SPEAKER_02 17:29

You see that a lot?

SPEAKER_00 17:30

Yeah, I do see that a lot. Um, I think it's it is again more common in patients who've had that before the concussion, that they have trouble with sleep too. Yeah. And so there are all these remedies that can help, you know, like melatonin and and most and you know, not using your phone close at, you know, near near bedtime. So try not to, you know, get too stimulated at that time.

SPEAKER_02 17:48

Good sleep hygiene recommendations, right?

SPEAKER_00 17:51

Yeah. Yes, exactly.

SPEAKER_02 17:53

So on the symptoms question, this is slightly farther afield, but what other conditions do you see arise in patients after they've had a TBI? Like I know autoimmune is one that can happen. It happened to me. I've I've looked it up. Apparently, it's not, it's it's I wouldn't say it's common, but it's not that uncommon because every rheumatologist I talked to said any assault to the body will be met by your immune system. Like that's who will react first.

SPEAKER_01 18:18

Yeah.

SPEAKER_02 18:19

And other people have told me about GI problems that they've that they developed after they had a TVI that they never had before. So, like, first of all, why is this happening? And are there others besides like just those two examples that you're aware of? But like first, why is this happening?

SPEAKER_00 18:32

Yeah. I but I think in part it's your body's trying to respond to a force of of that that you know dysregulated neurons in the brain, and the body is trying to meet, you know, energy supply, the demand is higher than what you know the body's meeting, so that can cause havoc on your your whole body. Really because you know, I'm a neurologist. Anytime someone complains to me about GI issues, I always refer to our calculus. But that's a different lane. It's a different lane, but I think that you know that's why we all have our respective fields, is because it's right most appropriate for for that. But yeah, I I'm sure I'm sure GI specialists have seen you know that that commonly occur. It's not something that I've really looked into that much, though.

SPEAKER_02 19:16

Yeah, it's it's just it's interesting because you think about it just as a brain injury, but then the brain is controlling everything else. So of course it would affect other systems. I mean, it it intuitively makes sense.

SPEAKER_00 19:26

Yeah. Yeah, it does. You know, I mean, if like cranial nerve, you know, four calls these in double vision, you know, because of that, people will have a head tilt to try to align the eyes together. What happens with the head tilt? The muscles from the rest of the body they will contract in a certain way. And so you'll have trapezous dysfunction. One shoulder might be a little bit higher. That goes down to the rest of your body. So you're you might have a little bit more pain on that side. So yeah, everything is really it's very related.

SPEAKER_02 19:53

Well, that makes a lot of sense. Uh, and maybe explains the autoimmune disease I developed within 30 days of the head injury. It may not, but it's as good a theory as I've got. Yeah. Okay, treatment. I'll talk about treatment, especially with with this group. I had a conversation with someone on an episode where uh she actually interviewed me and we were talking about treatment, and we split it up into two different categories, right? So the treatments meaning like medications, injections, things like that, and then therapies like for rehab to sort of improve the you kind of regain what you lost, some of the deficits, right? So I mean, this this is a an impossible question to answer, but I'll ask it anyway. Like, why do some treatments work for some people in this 10 to 30 and others not? Is are there any sort of things that indicate likelihood to succeed or likelihood not to succeed?

SPEAKER_00 20:38

Yeah, so you know, usually when we are talking about, so when I approach a patient with treatment for post-concussion, therapies are always so important. I mean, I I think there's not been one patient that I've not recommended therapies for for, you know, one of their symptoms or another. And so that comes along with, yeah, we'll you know, start therapies and along with medications. If someone, let's say, um, doesn't want to start a medication because they're you know medication naive or they have side effects, then we'll we will start with like some vitamins that are recommended by the American Headache Association if they're suffering with headaches. But usually when we're getting to the third, fourth line therapy for, let's say, the medications, or they've been in therapies for a really long time and they're not getting benefit, those are the patients that we will, you know, sit down with them and talk to them about. Okay, maybe that you it might take longer for your symptoms to get better, or you know, we might have to think about this new normal and and try to adapt a different world than what you were before. But it's it's more of a you know, conversation of okay, now we've gone to the third line, fourth line therapies, and you know, we haven't seen too much improvement. So let's talk about what your timeline may look like.

SPEAKER_02 21:49

This is the sort of like the transition point. I was gonna call it the tipping point, but don't need to call it that. But like at a certain point, it'll become it becomes clear to you that a patient is just not going to get better from these treatments. Right. And like maybe when it's you're on the fourth line treatment or or there's some other sort of rubric for figuring that out. When do you start to recognize that a patient might be in like the long tail of this is long-term post-concuss concussive period? And how do you talk to patients about it? Or do you wait for them to talk to you about it?

SPEAKER_00 22:16

Yeah, so oftentimes it'll come along with someone telling me that they feel hopeless because none of the therapies have worked. You know, it's those long-term relationships that, you know, I I know what someone, I know what patient, you know, what they're normally like. And so when they come to see me and and something feels off and something feels different, that's when I might approach them with a conversation of, okay, you know, we're at this point where, you know, we've tried almost everything. What I guess moving forward, what do you want your your new normal to look like? And sometimes I'll approach patients with that, but sometimes patients will approach me with it. So let's say there's still a couple more therapies that we haven't tried, but you know, everyone gets tired from trying something new and thinking that, oh, this is not gonna, why would this one work? The other six have not worked, right? And so sometimes I wait for patients to kind of tell me when they're ready to kind of stop trying new things because we can always think of something new to give you a trial with, you know, there's always, you know, for the most part, at a until a certain point where, you know, we we're at a point where, okay, we've tried infusions and that doesn't work, then, you know, we have a lot of tools in our tool belt. But I think it's a conversation that sometimes starts with the provider, sometimes it starts with the patient.

SPEAKER_02 23:29

Well, that's connected to this next part, because it's about the idea of what is acceptance, which feels okay, versus giving up, which doesn't really feel as okay. And I mean, I had to go through this. I'm sure a lot of people have to go through this, which is recognizing that you you called it the new normal. You'll never get back. You'll never get back to who you were before. Like those days are gone, and which is really, really tough, especially like you mentioned among high-functioning people, but I think among anybody, just like I want to be who I was before. What does acceptance mean in the in like in this context?

SPEAKER_00 23:59

Yeah, acceptance means figuring out, you know, who you are post-concussion, and you know, acceptance is understanding that you're okay with who you are post-concussion and that you've learned to deal with it, maybe not as as well as you had hoped, but figuring out strategies to cope with it. So strategies being taking a lot more breaks, you know, talking to your employer, or if you're not working, figuring out what your life will be like, you know, at home with family, getting help if if needed. So uh acceptance can be in a lot of different forms, but some patients also learn to to do new things, you know, like you. I was not a podcaster before. Exactly. I was I wrote but wasn't an author, so yeah, no, it's true. That that is true. Uh some of my patients have turned their pain into art. So acceptance is realizing that there are other things out there that you can do to kind of put your your pain into something else or your your other symptom, your other postconstruction symptoms into something else. So yeah.

SPEAKER_02 25:04

As long as they have someone to talk to about it, because a lot of the stories I read and the people I talk to are just sort of they're stuck.

SPEAKER_00 25:10

Yeah.

SPEAKER_02 25:11

They don't know how to get to that who am I going to be. All they know is they're no longer who they were, and they're in this sort of this interim period where they're not who they were, they don't know who they're going to be, and they don't know how to get there. And they're just trying to get back and they're stuck in the middle.

SPEAKER_00 25:26

Yeah. Yeah, it's it's true. It's it's those middle people that's can be because maybe they don't have access to health care or they live in a an area which don't doesn't have health care readily available, which you know it's we see that a ton of patients traveling super far to get to a a provider, but then it's not like they can do that on a monthly basis or on a bi-weekly basis, right? They can't get on an airplane, they already have post-concussive symptoms, right? So yeah, it's it's tough.

SPEAKER_02 25:54

Actually, you you segue it as usual and perfectly to the next section. But before we do, I want to just ask you flying. What is the impact on flying?

SPEAKER_00 26:03

Yeah, so flying can trigger sometimes flying can can trigger about the crystals and that you're moving, shifting around because of the the changes in the barometric pressure from an airplane. So if you have history, that might trigger things a little bit. Headaches can headaches can also be a result from flying too. There's no real contraindication to flying unless you had a severe concussion and you need, you know, you were you had a lot of traumatic brain injury, you know, imaging. Um, but there's no real, it's not like you should never travel again. It's more like, okay, thinking of coping mechanisms and having treatment with you just in case things get triggered a bit.

unknown 26:42

Right.

SPEAKER_02 26:42

Including just the stress of having to wait on five-hour TSA lines. I mean, the stress alone can trigger, it can make everything worse. I I recommend meditation apps.

SPEAKER_00 26:52

Yeah. Oh, that's great. Yeah, exactly.

SPEAKER_02 26:54

Okay, so you mentioned the insurance, and that actually is the is the the next sort of topic, which is the system problem, right? We have this 10 to 30 percent. They have long time, long-term persistence symptoms, and they need care, and there are barriers. So one barrier that you mentioned, right, is just proximity to, you know, a major medical system that has, you know, neurologic, you know, concussion neurology. Like that's that's definitely one, which just be geography. But what are the other barriers to people getting care, especially in the the sad group I'm part of?

SPEAKER_00 27:28

Yeah, I mean, you had those patients that have maybe lost their jobs from their concussion because they couldn't, you know, they couldn't do their jobs that they once were able to do, and then they lost their insurance secondary to that. And so that is so difficult to see. You know, it's it's really um it's unfortunate. It's terrible actually. They, you know, that is a huge, huge problem in the healthcare way. If they can't get care, what you know, what are they gonna do? Maybe their insurance doesn't cover, you know, getting more physical therapy or more vestibular therapy or more vision therapy after a certain number of sessions, if they're still very symptomatic. What are they supposed to do? What do they do? Home exercises can really only take you so far. Like you need an expert, and these therapists are experts and to get you quicker to your your you know, a different baseline. So yeah, it's it's really tough.

SPEAKER_02 28:18

And I think you'd mentioned the last time we talked that there also aren't enough neurologists.

SPEAKER_00 28:22

Yeah, that's right. There are not enough neurologists, and that's a big problem. And especially, you know, we need more neuroophthalmologists too. So, you know, working with medical students and residents, I'm always trying to get those trainees excited and interested in the healthcare fields of neurology and neuroophthalmology because we definitely need more. And I think that will help too, especially in areas where patients don't have access to that. But I think in those areas, you know, family medicine doctors have really become they're able to do everything now because their patients don't have access to those consultants outside. And so, yeah, it's it's great that they're able to help with with patients who have concussions and they're able to get patients those medications, the specialty medications too. And you know, we've seen that a lot as well. So that is happening, so primary care can absolutely.

SPEAKER_02 29:11

Well, that's good to know. Yeah, absolutely. So someone I had spoken to was really only seen by her primary care.

SPEAKER_01 29:18

Uh huh.

SPEAKER_02 29:19

Got old guidance, got the old guidance of full cognitive rest, no screens, lie in a dark room for two weeks. Okay. And then when when she mentioned something about seeing neurologists, that her primary care said, I don't really know that there's much they can do for you. So got a pre- I mean, she went and went one time, but she didn't go in with the attitude of this is something that can help. She went in with the attitude of this is probably not going to help because that's where the expectation had been set.

SPEAKER_00 29:44

Yeah. Right. Right.

SPEAKER_02 29:45

But the difference between being able to get to a specialized provider versus like what does that mean in like practical terms? If you can only be seen by your primary care versus if you can actually get yourself to a neurologist? Like, what what's the difference from a patient point of view?

SPEAKER_00 30:00

Yeah, I mean, you know, with all different specialties, neurologists have more expertise with uh neurologic disorders like concussion. So they're going to be more able to treat patients with concussion than, you know, we don't have the expertise as to to handle, you know, that's family medicine, a lot of family medicine or internal medicine issues that they are the experts at. And so it's all about who is the most apt to deal with your problems, right? So if somebody has these visual issues and their family medicine doctor is not sure, you know, what's going on, and then they go see a neuroophthalmologist and they diagnose them with a cranal nerve for palsy, they can get the prisms to correct it. They can get vision therapy to help with the cranal nerve, you know, palsy. If they have a convergence insufficiency that may be missed, they can get the vision therapy with the convergence exercises. They can they can get better from that. So neurologists can certainly be super helpful in in neurologic disorders. And just like I mentioned before, like I'm not gonna treat a GI disorder because I know that's not where I, you know, where I so I'll refer those patients to the GI experts. And so yeah, but it is it is true. It's all about it's all about the if you have a attitude that is defeatist about something, then you're gonna go in the mindset of being that way too as a patient. You know, it's it's very evident, even in the hospital setting, if you have a defeatist attitude about when you're taking care of patients, it's the patients in their families are gonna have to listen to you. Yeah, it's a self-fulfilling prophecy.

SPEAKER_02 31:23

Yeah, yeah, definitely. I think about these people, because I do come across them in the in the in the work of this project, who, because of reasons of either insurance or geography or or awareness, just never get to the right provider, to the right clinician.

SPEAKER_00 31:38

What happens to those people? Yeah, you know, it's it's hard to say because you know, they we don't see them, but it's just it's heartbreaking.

SPEAKER_02 31:46

Because even with the access, this is a difficult, really difficult problem to live with.

SPEAKER_00 31:51

Yeah. Yeah.

SPEAKER_02 31:53

Without it's even harder to that's not a question we could either of us can answer. It's just like it's just so heartbreaking. Absolutely, yeah. Okay, we we're we're coming in on the the the close. So lived experience. So when I talk to people who are in this sort of long tail, they they do describe feeling like they're trapped between between two worlds, right? They're not so symptomatic that they can qualify for support or not disabled enough to qualify for disability as an example, but they're also too symptomatic to function normally. They're right in between. And by the way, because this is an invisible disability, they look fine, and in most cases, in many cases, they sound fine. Yeah, right. And they're stuck in the middle. So, like, do you see that dynamic show up in your practice of like, I'm sort of too injured, but I'm not injured enough?

SPEAKER_00 32:37

Yeah. I definitely see that in my practice. I see that a lot in my practice, actually, where they can do their job, but they know they're not doing it, you know, the best of their ability, like they were before the concussion. So oftentimes they're asking for accommodations to kind of get close to, you know, the productivity that they were at before, which is reasonable, right? Things in in the normal workplace are very triggering for concussion patients. Like the lights, you know, the even for regular migranters, the bright lights, you know, they have these certain terrible lighting systems. The worst. The loud noises. You're not gonna want to sit in an office and converse with with people if you're dealing with pain um or if you're dealing with fatigue or mo mood dysregulation. And so, yeah, the middle, the middle lane is is is can be really tough.

SPEAKER_02 33:27

Yeah, it's and and I would think that that middle lane, because it's so challenging, can also lead to more anxiety and depression and like this circle. Just right. It it becomes a it it a snake eating its own tail and it just it just keeps going. Like it just gets harder and harder.

SPEAKER_00 33:41

Right. Yeah.

SPEAKER_02 33:42

Yeah. Yeah. I mean, honestly, for me, the only thing that got me uh over the wasn't really depression, but I would just describe it as like a my my the second year of this was dark. It was sad and it was dark.

SPEAKER_01 33:51

Yeah.

SPEAKER_02 33:51

Because it we had done a lot of the treatments, but I also hadn't figured out who I was going to be post.

SPEAKER_01 33:55

Yeah.

SPEAKER_02 33:56

And it really wasn't until I started doing all the writing and and all of this work that that became the therapy that worked. That became the like the only thing that got me through it. And I I I would love to know that everybody has a way out of this. And it doesn't have to be writing and it doesn't have to be content creation and podcasting, but something that you make of the life based on who you are now.

SPEAKER_00 34:16

Yeah, and I think it's really helpful for people going through it because it's really understanding and knowing that you're not alone. And so I think oftentimes people feel like they're alone, especially when they're told that you should be doing better. Why aren't you doing better? And it's it's awful. It's awful. So it it helps, it really helps people a lot.

SPEAKER_02 34:33

Yeah, no, and and it's it's awful. And also like that question of like, why aren't you better is often very well met, right? It's it's well intentioned. Yeah, but it just makes the person with it feel even yeah worse for not having recovered on the schedule and more guilt and more shame, right?

SPEAKER_01 34:48

Yeah.

SPEAKER_02 34:49

So okay, so final, not well, almost final question. What's missing? So in terms of research, like what are the biggest gaps around these persistent symptoms?

SPEAKER_01 34:58

Yeah.

SPEAKER_02 34:58

I think what should we be studying that we're not?

SPEAKER_00 35:01

Yeah, I mean, I think um looking at you know, the the people who don't recover, and I know that's how we started, but that's how we're gonna end too. But looking at those those people who don't recover, why what is the the I guess the number one thing that's you know not allowing them to recover? We know there's a genetic component to it, like we had discussed before. So people have certain genes, you know, they they're less likely to recover from concussion than people who don't. Um, but you know, what are some other things? I think I think that's like research that should be ongoing too. You know, there has been research out there that's looking at should patients be tested for specific genes before they go into sports that have a high likelihood of getting a head injury to know how long should they be out for after concussion. So I think more of that research would be super helpful for the the sports world as well as people out in the regular world who have a high likelihood of of having you know head traumas, you know, you know, actors who were doing a lot of stunts and and sorts of things, like you know, understanding the understanding the green one. That's it.

SPEAKER_02 36:05

That makes a lot of sense. So final question. Back to the the 10 to 30 percent of us. If you could tell patients in this group one thing that you wish they had understood early in the journey, what would it be? And you meant you you sort of referenced it at the very beginning of the conversation. So I you know, that we'll we'll just we'll complete the circle. But what's the one thing you wish people understood earlier?

SPEAKER_00 36:24

Yeah, that you know, that they are not alone, that there's a there's a lot of people going through the same thing. And if they're seeing someone who they don't feel is helping them, or is their gut is saying that you know this is not this is not working, find someone else that can find a different provider, find an another opinion. They should never just stop stop looking. But at a certain point, you know, feeling comfortable with your provider um is is really beneficial for those patients because then they're they're more likely to tell the provider what symptoms they're experiencing and they can get more help in that way. But just the feeling of this is we see this where patients don't recover in their typical fashion, and it's okay. And so that's okay.

SPEAKER_02 37:06

Yeah, yeah. And I I'm guessing you you would never say anything like that that there's a possibility that this may take longer than you think, than you expect. I mean, is that something you absolutely yeah.

SPEAKER_00 37:18

Yeah, I have that conversation a lot. Uh you know, the typical this your timeline may be different from what's written in the books.

SPEAKER_02 37:25

Right. And I think that's where a lot of people get tangled up because that 10 to 14 day you know window is out there and just about everybody seems to know it.

SPEAKER_00 37:33

Yeah. It's out there and it's uh very misleading to the a lot of patients because it's also dependent on how hard they hit their head and what symptom how many symptoms they had after the it's also dependent on so many different factors, just telling patients that from the get-go, you know, don't hang your hat on those 10 to 14 days because it it may in fact take longer than that. And so we'll we'll deal with things as they come.

SPEAKER_02 37:58

Yeah, I think that would be I think it would be helpful. Well, so on behalf of the 10 to 30 percent, thank you so much for coming back and helping us understand all of this because it is a vexing place to be. Uh, because you're neither here nor there. And I know a lot of people struggle, and I think they'll really benefit a lot from hearing what you had to say today. So thank you for coming back.

SPEAKER_00 38:19

Yeah, thank you so much for having me. I'm I'm so happy to, you know, to be on on this podcast.

SPEAKER_02 38:23

And certainly, you know, it's it's tough, but it's really gonna help a lot of people. And maybe we'll do a live event and invite people to come in and ask questions. That could be fun.

SPEAKER_00 38:31

Yes, absolutely. Thank you so much.

SPEAKER_02 38:33

Thank you. Thanks for joining us for this week's episode of Rupture, the world of Best Gesistan. Today's episode featured Dr. Melody Morati, and we focused on the 10 to 30 percent of people with concussions who don't recover in 10 to 14 days. If this episode resonated with you, or if you know someone who could benefit from hearing it, please consider sharing it with them so they may find our community. And to support our work, like, comment, subscribe, share, or join us at bestguessstand.com. Bring us your rupture. Bring us your systems failure. We'd love to hear your story.