The SCAD Heart Attack I Never Saw Coming: What Women Need to Know | E073
In this episode of Wildly Optimized Wellness, I open up about my journey with SCAD—spontaneous coronary artery dissection—a life-altering, yet little-known heart condition that primarily affects women. Six months after my SCAD heart attack, I’m sharing everything I’ve learned about this condition, from its surprising connection to hormone fluctuations to the gaps in research and diagnosis. I also dive into the emotional and mental health impact of surviving a SCAD event, the challenges of navigating medical care, and what we can do to raise awareness. If you’ve never heard of SCAD before, you’re not alone—but this is something every woman should know about.
In This Episode
00:00 - The SCAD Heart Attack I Never Saw Coming: What Women Need to Know
01:37 - What is SCAD?
04:28 - Who is at Risk?
06:31 - A Trip to the Mayo Clinic
09:29 - The Lack of SCAD Research
16:59 - The Hormone Controversy
26:54 - The Emotional and Mental Health Toll
34:34 - The Role of Functional Breathing
42:40 - The Future of SCAD Research
45:27 - Why SCAD Awareness Matters
Resources Mentioned
Mayo Womens Cardiovascular Medicine
Episode 062 | Cracking the Migraine Code
Episode 055 | Power of Functional Breathing
Connect with Toréa
Website: https://www.torearodriguez.com/
Instagram: https://www.instagram.com/torearodriguez/
Threads:https://www.threads.net/@torearodriguez
Transcript
Toréa Rodriguez 00:00
Welcome to the Wildly Optimized Wellness. I am your host Toréa Rodriguez, and I've had a lifelong fascination with the natural world, and its impact on our well being. For over a decade, my work as a functional practitioner has been exploring how our relationship to our environment, to our thoughts, beliefs and emotions can have a profound impact on our physical and mental wellness. And because of that neurology, and brain based rewiring is a core focus of my practice. I am passionate about helping people not only feel better, but actually achieve that vibrant, no holds barred version of themselves. They've been missing for a long time, and how we actually get there. Well, that is what this show is all about. Please keep in mind that this podcast is created for educational purposes only and should never be used as a replacement for medical diagnosis or treatment. And if you liked what you hear today, I would love it. If you would leave a review, hit that follow button or share it with a friend. Because we never know how much we can impact others when we do. Let's start today's adventure, shall we?
Toréa Rodriguez 01:11
Okay, friends, go get a tea or some water and get yourself comfy, because today, there's going to be a lot packed into this episode. Today's topic is important to all women of all ages, and this is something that we all should be made aware of. And today I'm going to be talking about my experience with SCAD and what I've learned of this not well known, yet life threatening condition.
Toréa Rodriguez 01:37
So as I record this today, marks the six months since I experienced my SCAD heart attack, and I'm not surprised, if you don't know what that means, most people hear the words heart attack and assume that it has something to do with atherosclerosis or cardiovascular disease, also known as as CBD. However, the mechanisms around SCAD, it's something entirely different. It stands for spontaneous coronary artery dissection, which means that an artery can have a sudden tear. And so arteries are blood vessels comprised of multiple layers. So for simplicity sake, you can think of this as an inner layer, a middle layer and an outer layer. And with SCAD, there can be a tear in the inner layer, and that creates this flap that blocks or obstructs blood flow in that artery, but more commonly the middle layer. And the middle layer that's got smooth muscle cells and elastic fibers in it, but that can split, and then it has spontaneous bleeding, and that creates a hematoma, or you could think of it kind of like a blood blister, and that bulges and blocks or constricts the blood flow in the artery, so similar to arterial plaque and build ups. The effect of a block artery is still the same. It's restricted blood flow to the heart. And in common terms, we call that heart attack, and in medical terms, it's called a myocardial infarction, or MI and the heart doesn't necessarily stop unless the blockage is really severe. But unlike ascvd, a SCAD is not part of a chronic disease process.
Toréa Rodriguez 03:19
It doesn't build up over time. It's spontaneous. Means it happens quickly, and it often happens without warning. There's no blood test or any test, for that matter, to determine if anything might be leading to a scat event or set in another way. Right now, there is no way to predict when a dissection might occur. Now, a lot of SCAD patients are physically active, they're fit, they're otherwise healthy. It's not associated with pre diabetes or diabetes. It's not always associated with elevated lip markers, although it can be and there's currently no easily attainable genetic tests to determine if there's a risk factor, although scientists have identified up to 16 loci that might be associated with SCAD risk. But we need mouse models to confirm. We need more research, and I'm at present, there's no mouse model on SCAD at all, and just not a lot of research. And so for many there aren't any symptoms that lead up to the event just this spontaneous event itself, it can happen anytime and anywhere with no warning.
Toréa Rodriguez 04:28
So here's what we do know is that 95% of people who experience SCAD are women, and most of those women are in the age range of 35 to 55 although there are cases that are younger than 35 and cases that are older than 55 and cardiovascular deaths of any type are the leading cause of deaths in women, surpassing breast cancer and SCAD is responsible for up to 35% of all. Heart attacks in women. So why aren't all women experiencing SCAD? Well, we do know that it's highly correlated with major shifts in hormones, so think pregnancy, postpartum, Peri and postmenopausal, but not every woman going through a pregnancy or through perimenopause have SCAD. So there's more to it. It's more complex than just the hormonal piece of it. We also know that it's highly correlated with a vascular condition called fibromuscular dysplasia, or FMD. And FMD is a condition causing abnormal cell growth in the arteries, and that's present in up to 50 to 86% of SCAD patients. And FMD isn't the only soft tissue disease that's correlated with SCAD, but it's the predominant one. And SCAD most commonly occurs in a coronary artery, hence the name. But it can also happen in any other artery. So it can happen in the carotid, it can happen in the kidney, it can happen in the brain. It can happen literally anywhere, and depending upon a patient's personal risk factors, recurrence rates are pretty broad. They're anywhere from 3% to 30% and most recurrences happen within the first few years, but they can even occur decades later.
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Toréa Rodriguez 06:31
I just returned from a trip to the Mayo Clinic, and that is something that I never thought that I would say in my lifetime, but Mayo is one of the world's leading centers for research in SCAD. It was one of the very first research programs formally established for SCAD, and its formation was just in 2010 that's just 15 years ago. So nearly as long as I've been a health practitioner, there is a registry called the International iScad registry. It's a multi center registry, and they're focused on advancing SCAD research by being able to compile data from participating institutions worldwide. And so this allows researchers to have larger population studies. But as of 2024 the iscad network has grown to 27 participating institutions, which may sound like a lot, but it's just 27 it's really not a lot, and because it's now just being recognized and investigated, we just don't have a lot of studies, nor do we have a lot of clinical trials, which means It's hard to really know a lot about the condition. And even my cardiologist from the hospital, man, he admitted to me that I'm gonna know more about scan than he ever will. And he's been practicing for 35 years, and in all of that time, he has only seen 17 cases. I was number 17.
Toréa Rodriguez 08:02
So that gives you an idea for how unknown SCAD is in general cardiology, and it used to be thought of as an extremely rare condition, but these types of heart attacks have only recently been recognized as having a completely different cause than traditional cardiovascular disease, and because most cardiologists don't even get trained on SCAD during medical school, this is largely misdiagnosed in the months leading up to my trip to the Mayo Clinic, I did what I normally do with all my medical and health challenges, I dive into the research. My attending cardiologist wasn't kidding when he said there isn't a lot of research. There really isn't. So in PubMed, you know, if you do a search for SCAD or a spontaneous coronary artery dissection, from 2010 to present, there are less than 2000 papers, and then all records on PubMed SCAD only has 2400 papers total. Now that might sound like a lot, but when you compare that term to the term cardiovascular disease, there are over 1.4 million papers in that same 2010 to present time frame. So that gives you an idea of how few papers and how few studies and how few researchers we have looking at this condition. There's just not a lot of research on SCAD yet.
Toréa Rodriguez 09:29
And so during those months last year, I was also rock bottom with my hormones. So perimenopause is quite the roller coaster, hormonally speaking. And I was, and I somewhat still am, in really wild amplitude swing territory. I would go months with having very high levels of estradiol, and then it would drop drastically and not even be detectable by the labs. And it was the months leading up to SCAD that I first started experiencing a lot of symptoms associated with the decline in estrogen. I had joint pain so intense in my fingers it would wake me up in the middle of the night. I had forgetfulness and unclear thinking much beyond brain fog that I've experienced in the past, just like complete forgetfulness beyond what I was ever familiar with. But most notably, I started getting hot flashes during the day and night sweats at night. And there is nothing like waking up every single hour on the hour, completely drenched every single night. Totally not fun. But I also felt like I was in this coffin corner. And what the hell is coffin corner, you might ask? So that's a term that I learned from aviation, and we're going to do a little aviation Performance Engineering here, just to catch you up. But the coffin corner, it's a dangerous situation that can happen when a plane is flying at very high altitude, and usually it's test pilots that are dealing with this. But at those altitudes, the plane has to fly at just the right speed, not too slow, not too fast, because if it flies too slow, it can lose lift and enter an aerodynamics Hall. And if it flies too fast, it can run into problems with the air behaving very differently around the plane, which can make it very hard to control. And so the tricky part is that at these high altitudes, the safe zone between these two speeds gets very, very small, and so the pilot has very little room for error. And it's called the coffin corner, because getting it wrong can be extremely dangerous or fatal. It's like being boxed into a corner with no good options. And the discharge from the hospital included a very stern directive from the cardiologist and his physician assistant, they both emphasized that under no circumstances should I be taking hormones of any kind for menopause. The cardiologist basically was telling me that I got to raw dog menopause.
Toréa Rodriguez 11:56
All they knew, though, was that SCAD was correlated with fluctuating hormones. There are no studies that show exogenous hormones cause SCAD none. The research hasn't advanced to that point yet. We just don't know. But the published cardiology standard of care suggests removal of exogenous hormones, yet being in perimenopause and reading about menopause, it seems like everywhere I turned clinicians and menopause experts and book authors were raving about the benefits of being on estrogen to reduce not only symptoms, but to have protective effects and maintaining muscle mass, bone density and cardiovascular benefits. So I was well aware of how beneficial it was to be on HRT during the perimenopause, menopause transition years, yet here I was being told that I was in the category of folks who couldn't have those options and couldn't use those approaches. To be clear, there are other options for hot flashes. And my opinion, none of them are all that great. So there is a medication called vioza. It's a medication that got approved in 2023 for hot flashes, but now it's got a black box warning on it about liver damage. So, yeah, no, not at all. There is gabapentin, which is a seizure and pain medication that has off label use with hot flashes. Still, I'm not super excited about that one. Or there are SSRIs that can be effective with hot flashes. And also not really interested in that, because SSRIs come with a whole host of side effects, and they can be difficult to get off of once you need to get off of them.
Toréa Rodriguez 13:46
So I tried for months to find a practitioner who had experience with both menopause and SCAD in hopes of exploring this nuance. And most people didn't know about scat at all or because it had anything to do with the heart, they wouldn't even have a discussion with me about the possibility of hormone replacement therapy to make things even more complex. My CT scan at the hospital revealed large uterine fibroids, which is honestly pretty common during perimenopause, but the doctors urge me to rule out uterine cancer, fabulous. So not only am I dealing with SCAD, but now I have to rule out cancer too. Brilliant. I had recently moved to new location, and I hadn't quite established a gynecologist yet, so I made an appointment with a new gynecologist in hopes to gain access to an ultrasound and further diagnostics to rule out the cancer. So there I was in an exam room wearing a gown sitting on the crinkly paper, not my favorite spot, and this doctor asked me what brought me into her office. So no, she didn't read any of the records for. The hospital that I worked for weeks to make sure that she had in my charts before the appointment, so I had to relay the whole story, and she immediately became agitated and started explaining menopause to me like I was a child. She accused my primary doctor of creating an unsafe situation by mixing hormones with heart disease, and started quoting the whi study from 2002. Now, by the way, that study we know now was poorly conducted and presented in correct information. It's also been superseded with newer studies and clearer data on hormone replacement therapies and cardiovascular disease. And she, at one point, with her voice shaking, said that she was terrified for me. Wouldn't the actual fuck just happened like I was stunned that this was how a medical professional conducted themselves. Clearly, I had crossed into some kind of taboo territory in her eyes, and she wanted nothing to do with it. It didn't matter that she didn't understand SCAD number one, she didn't understand that it wasn't even considered heart disease. It didn't matter that I was there for uterine fibroids. She clearly was out of her comfort zone. And this is just one example of many people that I talked to that heard two words in the same sentence, heart and hormones, and they sort of kind of freak out. They didn't want to talk about the nuances, or because they hadn't even heard of SCAD, they didn't want to take me on as a patient. So here was my coffin corner. I was damned if I was going to take the hormones, because the party line and the standard Mo was to take women off hormones after God, but I was also damned if I didn't take the hormones. Because guess what, women with hot flashes and night sweats and other vasomotor symptoms are at a 48% increased risk for as CBD, fabulous.
Toréa Rodriguez 16:59
And as much as I wanted to go to Mayo and find answers, I also knew that I might find a bunch of we just don't know. With SCAD, there is a lot of nuance, meaning almost every SCAD patient is different. It happens in different phases in life. It happens with different levels of severity. Patients can have one, many or zero cofactors, as those things being the soft tissue diseases that I was talking about before, or the things that are commonly found along with SCAD. And in my particular case, my dissection, thank goodness, was not severe, which means I was able to allow it to heal naturally. I didn't have to have a stent be in place. I didn't need surgery. And all of this was a really great news. And at the Mayo Clinic, I was able to be seen by Dr Marysia Tweet. She is part of the mayo SCAD research or team led by Dr Sharon Hayes. And to be honest, I was a tiny little bit star struck to get to meet with Dr Tweet because her name shows up as an author on a lot of those papers that I've read on SCAD. And while I was there, I was able to spend two full hours with her, of which I am so grateful. And what I learned from my time with Dr Tweet is that in order to know more about what led to my dissection in the first place, and in order to be able to assess risk moving forward, we need to do more testing. So I'm in the middle of doing some more tests to learn about the soft tissue diseases. So this is going to be a genetic test, and we're looking for things like FMD, erlose, Danlos Syndrome, or EDS, Marian syndrome, amongst a couple other things. For me, FMD is less obvious meaning. FMD exists kind of on a spectrum, and the typical physical characteristic are these really curly veins and arteries, but a patient can show that phenotype over their entire body or just a section of the body, and most CT scans void arms and legs and so oftentimes mild FMD cases are missed. So if FMD is present for me, we know that it's mild. So that's good that keeps me in a lower risk bracket for recurrence. Moving forward, having migraines is a common correlation for SCAD, but the data is unclear if that's a risk increase by having a history of migraines or not, because migraines, like anything else in biology, are also nuanced, and they have different causes. Some can absolutely be vascular in nature, and some are not. And if you're curious about what I learned to put my migraines in remission, go back and visit episode 62 cracking the migraine code. We know that atherosclerotic disease also increases risk, but the amount of calcification in my arteries is, in particular, is near zero. Now it's not 00 even though my cardiac calcium score is zero, it's actually not totally zero, but it's pretty close to that. I have a couple small spots in the body where there is a little bit of calcification, but not enough for the medical team at Mayo to suspect an increase in my risk profile, and so as long as I keep my lipid markers in good order and really monitor cardiovascular health, that can lessen the risk for me moving forward, now, emotional stress and physical stress, those two things are very, very common with SCAD patients, especially at times preceding an event. It's unclear, though, how the stress might be inducing an event. But if I'm fully honest, in the weeks leading up to my event in the summer, I had additional stress. During that time, I was lifting super, super heavy at the gym. I was trying to do set my own personal records with lifting. It was summer. I was mountain biking and hiking a lot, and I was working on some big projects for my business that included long days, a lot of energetic output.
Toréa Rodriguez 21:11
But was it just those few weeks, or is it a lifetime of my type, a go getter, personality, that eventually led to the dissection? I'm not sure that we will ever know. But most women that I've talked to who have also had a scout event will share that some kind of emotional trauma or physical stress preceded their event, which just makes me pause for a minute, because we have done such a great job at normalizing crazy amounts of stress, particularly among women. I would not be surprised if SCAD prevalence starts to increase if we don't raise awareness of the condition. And then, of course, hormone fluctuation is almost always present with SCAD patients. And I say almost always, because there's also the 5% of patients with SCAD that are men, and they typically don't see the kinds of hormone variations that women do, but this is why we see it so commonly in pregnancies and postpartum. Now, of those two cases, postpartum is more common than during pregnancy, but it has happened, and the other major life event is perimenopause and early menopause, meaning that you're immediately following the characteristic textbook definition of menopause, not having a period for 12 months. And I've been on the perimenopause roller coaster for years now, and I collect blood work pretty often with the guidance of my primary care provider. So I happen to know that I had crazy high estrogen levels in January last year, and by July, they were non detectable by the lab. So really wild drop off roller coaster swings. And I discussed this with Dr tweet, and there are some study cohorts that are looking at this more in detail. So these cohorts are perimenopausal women, because there's open questions, what's happening here? Is it a rise in estrogen, or is it the fall in estrogen that contributes to the splitting of the layers in the vessels, or does it not even have to do with the direction of the shift, and instead, it's a rate of change that's important, not the direction. We still don't know, but they're studying it, and I would expect that we will see some papers to be published on this in the next year or two. That's kind of where they're at with the study phases.
Toréa Rodriguez 23:36
So this makes hormone use, both birth control and hormone replacement therapies really, really tricky for a lot of SCAD patients, and most SCAD patients are asked to not use exogenous hormones at all. But there is nuance here, because we know that for some patients, myself included, the symptoms of low estrogen can be fairly severe and cause quality of life issues. For me, I didn't sleep well at all when I was experiencing night sweats. And of course, if our sleep suffers, our health suffers, so that's no good. So at Mayo, I now have a whole team of doctors that are working together, and I'm grateful that Mayo's approach is very much about treating the nuance of the individual. It's not about applying cookie cutter treatments or standards of care for all patients. And with that, I'm also working with one of their menopause clinicians to be able to best support me as I further progress into menopause.
Toréa Rodriguez 24:35
Lastly, I wanted to mention that Dr Tweet and some of the other Mayo teams are working to have a risk matrix of sort. You can kind of think of this as a scoring profile, and they're working to have this published soon. My understanding is that it's under peer review, which is an important step in the process, because we want these studies to be reviewed and even duplicated where it makes sense, so that that information is reliable, but with a risk assessment scoring system, the game is going to change considerably for SCAD. That means that younger women can know going into normal life events like pregnancies and perimenopause, what their risk might be. It'll be a tool that can help raise awareness in the medical field and also amongst the general population, because I feel like had I known first of all, had I known that SCAD was even a thing that might have been a huge help, and if I had known that I was in a higher risk category, I know that I could have been a little bit more proactive at things like managing my stress levels, not just taking on more stress, because I could, in the past, I could be modifying my workouts to make sure that any heavy lifting was always conducted under fluid breathing, meaning no vasalva or no holding your breath during movement. And I might also have been able to support my body a little bit better through the perimenopause estrogen roller coaster. So I am all for having a published risk matrix. I'm going to be really excited to see that come out. And clearly, the impact of SCAD is primarily on the physical body. That's one thing, but the impact on the mental and emotional body are quite another. So in the medical world and the wellness world in general, I don't think we talk about the mental health implications nearly enough. Most people are focusing on the MediCal, biological issue at hand, and rightfully so. So my event started during my morning routine. I had just taken my thyroid medication, and honestly, I felt like I got a capsule stuck in my throat, right at the base of my throat, and that led to a little bit of pain behind the sternum, not too unsimilar as to what I feel when the pill gets unstuck and finally goes down.
Toréa Rodriguez 26:54
But then I got some pretty intense muscle tightness in my chest. It felt like the pec muscles just went into spasm, but the pain wasn't super severe, because I've experienced migraine pain that took me out completely, but this was only a fraction of that pain. It just felt really intense, like contraction. And what clued me into it being a bigger deal was that after all of that subsided in about 30 minutes, I felt super weak in my arms and my legs, and that is what helped us decide maybe we should go to urgent care. And that is what led us to ER. And they wanted us to go straight to er so that I could get a value called troponin measured. And troponin is an enzyme that our body releases when we have muscle damage. So that could be, if you are working a lot in sports or you're racing in a marathon or a bicycle race, you're going to have troponin because you're breaking down muscle. If you do heavy lifting or heavy workouts, you're going to break down muscle and you're going to have troponin. So the way that they do this is they measure the troponin when you get there, and then they measure it a couple hours later, and they check to see if there's a major change. So after five hours in the ER, the ER doc that was treating me, she had, she was pretty sure that what I had experienced was esophageal spasm, and I was kind of going along with her theory there that felt about right. And we were both shocked to learn that I was indeed a cardiac event, and she had to admit me to the hospital and transfer me to cardiology.
Toréa Rodriguez 28:35
So from my hospital bed the next morning, following my myocardial infarction, we were talking with the cardiologist who was explaining all of this, all of his findings, all of the information to me about SCAD, and the words that reverberated in my mind over and over were rare condition. We don't know a lot, no way to predict it can happen anytime, anywhere and anywhere in the body. Yet, after that discussion, I was discharged that same day, so I left with major exercise and lifting restrictions. I was sent home with a ton of pill bottles and told to come back and see them in six weeks, I was under no circumstances to take any hormones of any kind. And prior to this, I was taking progesterone for perimenopause so that I had to stop. I was also told to go directly to the emergency room if I felt any quote, unquote suspicious symptoms. What the fuck does that mean? I mean my heart attack didn't even feel like a heart attack to me. So how was I supposed to figure out what was suspicious? I was so stunned. I left with so many questions and more uncertainty than I really knew what to do. With because here now, I was suddenly hyper aware of any sensation in my body. I was constantly scanning for anything that felt off. I was scanning for the same sensations that I felt during the event. I was scanning for new sensations and other locations in my body. And I'll tell you, taking my supplements was particularly difficult because I was afraid I was going to get another capsule stuck and trigger another event. And so after the briefing with the pharmacist on the meds that I was given,
Toréa Rodriguez 30:34
I was also suddenly very hyper aware of being on the lookout for side effects, and one of those meds can slow the heart rate down and result in a cardiac arrest, for fucks sake. Oh, my God. I would be lying down in bed trying to go to sleep, and I would jolt myself awake at night because I would suddenly have the thought of, I wonder if I'm going to wake up in the morning. So it didn't matter that my health prior to this was great. It didn't matter that my particular case wasn't complicated by needing a stent to be placed or needing any kind of cardiac surgery. The only thing my brain could do was to try and predict when I was going to have another event. So everything I experienced, everything like going for a walk by myself, or driving to run an errand or walking upstairs, I was afraid it was going to happen again. Now I know what anxiety feels like, and I also know what panic attacks are like, and anxiety, as a lot of you probably know, feels like a tightening in the chest, but now this feeling in my chest was a whole bunch of mental gymnastics. Is this another event? Or is this me being anxious about having another event? And mornings, of course, were particularly challenging, with every morning routine having the same thought process over and over again.
Toréa Rodriguez 31:59
So six weeks of walking as my only form of exercise, my anxiety was still pretty high, and we saw the cardiologist for my checkup, and I found him a little too nonchalant for my case. He said that things look great, continue to take the medications, see you in 12 months. And that was also the same day that he also told me that I would be more of a SCAD specialist than him and, oh, by the way, you can start cardiac rehab if you want to, but I think you're probably going to be bored. Oh, my God, I knew then that I had to seek out a SCAD specialist. I had too many unanswered questions to just write out another 12 months like this. Now I will say that cardiac rehab was very good for me. It helped me learn how to push my body safely given my continued restrictions. So no high intensity workouts, no races, no lifting over 50 pounds. It allowed me to learn how to assess moderate intensity exercise without relying on heart rate, because, of course, some of the medications were artificially changing my heart rate around, so it wasn't a reliable metric. So I got to learn what that actually felt like, and with that, I resumed strength training, but only proper breathing technique. Now, some of you might remember episode 55 the power of functional breathing with Dr Andy Sabatier. And for those that haven't listened to that, I encourage you to go back to Episode 55 and listen in on that conversation, because it's great now. Andy is he's a PT that used to work in the ICU and the ER, the very same one that I was admitted to six months ago, and in that role, he coached patients into learning how to use functional breathing as a part of their recovery. Andy was the first person I called when I was discharged from the hospital, because I knew I needed to initiate PT with him and relearn my breathing in a new way. So now, every moment I'm in motion every workout, every bike ride, every hike, every time I lift a package from the front door or carrying groceries, I am very intentional about my functional breathing, and this is one of the reasons why my recovery has been accelerated beyond the typical, the typical, I shouldn't even Say typical, because all the SCAD patients are slightly different, but it's one of the reasons why my recovery has been accelerated, that and I was very fortunate, right, that my dissection wasn't severe.
Toréa Rodriguez 34:34
Some people, of course, take longer in their recovery than others. It just all kind of depends on the amount of tissue damage done or damage done to the heart during the event and the severity of the dissection itself. Yet, despite the wonderful team that I had at cardiac rehab and working with Andy, I wasn't really prepared for the panic attacks that came seemingly out of nowhere. Couple things would trigger it. Spending too much time in the research on can induce a panic attack being alone while my husband was in the office or on a trip. Panic attack, losing cell signal, panic attack, driving myself across town. Panic attack, you get the idea. So at first, these attacks came frequently, and I told myself, you know what? This is normal, considering what had just happened, it's going to take time for me to recover from them to go away. I kind of figured that once I completed cardiac rehab, I'd be good. Then, of course, one weekend after cardiac rehab, my husband, Moxie and I, we set off to do an easy hike near some waterfalls in Oregon, and the trail was relatively short. It was easy for our ability and my restrictions. We had three miles. It's not strenuous. Pretty waterfalls. It's going to be great. But then on the hike, I was thinking through, as I always do, risk scenarios. You know, when I was a pilot, I was trained in risk assessment techniques. And you know, I'm used to doing this, because when we adventure in the backcountry, risk assessment is part of our planning and our execution on our trips. So we had our GPS communicator with us, we had our first aid kit, we had water, we had food, like all the things that we would take with us on a normal hike, especially when it's out of cell range. We also intentionally chose a hike that was within an hour of the hospital. But then I started thinking, Well, what if I have another dissection right here? Fine, not too dissimilar from the thinking from aviation, you know, what if I lost my engine right here, over in the mountains? Where am I going to land? Pretty typical kind of thinking that I've been trained in, and I'm used to mentally calculating changing conditions and changing plans. But as the trail came up on this viewpoint for one of the waterfalls, the view was near a ledge that overlooked the river canyon below, and like lightning, I got overwhelmed by fear in that moment, and suddenly I was in a full blown panic with intrusive thoughts of both of us falling to our deaths. I'm freaking out. Mind you, we are still five feet away from the ledge, if not more, and the ground and the geology is giving no indication of it being unstable, but I found myself hyperventilating, sitting on the ground, crying. We've got other hikers passing by asking if everything's okay, yep, we're good, just having a meltdown in the middle of the forest for no reason. Thumbs up, yay.
Toréa Rodriguez 37:35
These kinds of attacks would repeatedly happen, even if I kept all of my wrist to very low levels, and they would feel like they were coming out of nowhere, feel like it was in a completely controlled environment and what I found was that when I was reading studies or some of the few clinical trials, if there was mention of survivability, that was a sure way to induce a panic attack. All of this is to say that we don't talk about the mental health issues that arise from medical trauma nearly enough. This can happen to anyone who receives a serious diagnosis or experiences a life threatening medical event anytime we have to face our mortality. Yet we know from the literature that it's absolutely happening. So for example, in the general population, PTSD prevalence is about three to 5% anxiety disorder, that prevalence is about 19% and for life threatening events such as non SCAD heart attack, it's 12 to 16% and for traumatic injury, it's 15 to 20% however, in 2018 a study published in the Journal of the American Heart Association found PTSD symptoms in approximately 40% of SCAD survivors at one year post event. And we see a similar trend with various anxiety disorders too. So for non SCAD cardiac events, persistent anxiety anything that lasts beyond one to two months post event, that affects 20 to 30% of survivors. Anxiety disorders, by contrast, are reported in 30 to 50% of SCAD patients, with some studies suggesting even higher rates, particularly in the first year post the event.
Toréa Rodriguez 39:24
The thing is, this isn't readily communicated information to the patient at the hospitals. The sad truth is, a lot of women get their symptoms downplayed when they're at the ER. So last fall, I participated in a SCAD support group with 13 other women who had had a recent SCAD diagnosis, and of those women, when we shared our event stories, nearly half of them were sent home from the ER with no diagnosis other than having mild anxiety, and their conditions had to worsen or they had to actually transfer care systems for them to receive a proper diagnosis. And even though I lucked the fuck out by having a cardiologist working a shift in the ER who just happened to have seen it in his tenure, there was no mention of the mental health implications. The focus was all about caring for the heart and the physical recovery. But the support group really helped me realize just how common the panic and anxiety were in SCAD patients, and it also helped me decide to seek out treatment for early rather than just hoping that this was going to go away on its own. If there is one thing that I know about the nervous system in our own neurology, is that if, if you repeat a behavior often enough that's going to cement in a neural pathway to keep that state going. So you had better believe that I was determined I'm going to interrupt this.
Toréa Rodriguez 40:52
Now today, I work with a wonderful therapist who employs a technique called Brain spotting, and it's similar to EMDR, which has been shown to be highly effective with PTSD and anxiety disorders, and brain spotting has been shown in studies to be just as effective in reducing symptoms. And I can say that since starting brain spotting with my therapist, the panic attacks have stopped for now. Might have another but they're not happening at the rate that they were, and the anxiety has been reduced significantly. I have been physically and mentally able to take on more intense outdoor activities that are further away from medical facilities with really good success. I have to say, though that since the event, with each new activity, it's it's as if I am proving to myself that I can all over again for everything.
Toréa Rodriguez 41:46
But there is a lot of celebrating milestones that might appear really small to other people, but that's okay. I'm celebrating milestones that I had celebrated a long time ago, and the only way to build this confidence is to prove to myself that I can. I'm super proud of this one. So over holiday break, we did a hike that even though we had a recurrence plan, we ended up in an area that, you know, we'd be unable to execute that plan, meaning, meaning we had obtained double insurance coverage for air ambulance support because we were too far away from a hospital to arrive by car or ground ambulance. We had our GPS communicator pre programmed with messaging required for another dissection. But what I hadn't thought through, however, was where was the helicopter going to land?
Toréa Rodriguez 42:40
We were in a thickly wooded, very sloped area shrouded in fog with zero visibility, about an hour's hike from the nearest road. Yeah, that was there was no way we were going to be using air ambulance and executing that plan. But in that moment, instead of it triggering a panic attack, I got to decide to enjoy the adventure other than turn back. So that is a huge win, and also some learnings to not do next time. But there is something that my cardiologist said to me on discharge day that I'm really grateful that he said, and it was a reminder that I needed in that moment. And he said, you can choose to let the diagnosis define and possibly limit your life, or you can choose to live the best possible life given this new information. And I'm so glad he said that I don't wish this on anybody, but you know, one of the reasons why I chose to record this episode is because of the conversation that I had with the technician at Mayo. So she was doing ultrasound in my heart, and I asked her how many SCAD patients she saw. And for her, this is kind of a routine condition. She sees it all the time. And this perception difference is because Mayo is a world leading research center on the conditions, so cardiologists there are well informed about it, techs are well educated about it. Yet, the rest of the world, it's rare and hardly anybody has heard about it. A lot of medical professionals feel they don't even have the expertise, so they won't engage in it. And SCAD was once considered a very rare condition amongst women and some men too. But now, with all of that that we are learning about it, what we're learning is that it's largely misdiagnosed, so it's actually much more prevalent than we previously thought, because this type of heart attack, it doesn't fit the profile of what we used to know about heart attacks in women. And so with all these misdiagnoses, what's worse is a lot of women just simply get dismissed. They don't even get a diagnosis at all. And even the ultrasound technician mentioned that she felt that a lot of the patients that she. Were either misdiagnosed in the beginning or the diagnosis was missed entirely. I mean, I had no idea that this was happening to postpartum women. I had no idea that this could happen in perimenopause and menopause. Heck, I didn't even learn that more women die of traditional cardiovascular disease than they do a breast cancer, until I started researching SCAD.
Toréa Rodriguez 45:27
So until we have better pre screening, it's my belief that women who are pregnant and women who enter perimenopause should know that this is something that could happen to them, and perhaps all of this is related to the fact that I'm a Gen X woman well within the wonky perimenopause years, and a lot of us feel like we walked into menopause territory with zero warning, because generations before us, they just suffered in silence. Yet it's pretty common that a Gen Xer kind of shares my attitude, which is, Oh, hell no, we are not gonna raw dog this. So what do I need to know? You know, it's well known that women's research is underfunded and we need to do better, and so hopefully I'm contributing in a small part by publishing this episode so that other women can be informed. Because an experience like this, it changes you. You become acutely aware of what's important in life. Things You use to deem important suddenly become completely low priority and totally easy to let go. You become acutely aware of who are your people and precisely which ones amongst you are just putting on a front because, trust me, during your time of need, you can watch those false pretenses dissolve like cotton candy melting on a humid afternoon, because there are going to be people around you who get triggered by your experience in some way, and some won't be able to be there for you. And my close circle of friends and family man that became tighter and more connected, and the ones who were never really my people, they ghosted. And as painful as it is to lose a friend, you realize they were never really your friend anyway. You start to distinguish what's real from what's an illusion, and you start to question beliefs you once held about health and wellness, and that is all something that I'm going to delve into into the next episode.
Toréa Rodriguez 47:38
So that is what I know. Six months into this SCAD journey, I still have some major milestones ahead regarding my recurrence risk categories, some more testing, some more monitoring, and I still have some recovery time in front of me. And if you've listened to all of this, thank you. And if you know someone who might be needing to hear this, please pass this episode along to them. If you have any questions about SCAD or you want to talk to me, you can find out more about me and how to reach me on my website torearodriguez.com
Toréa Rodriguez 48:14
Hey, thanks for joining me for this episode of the Wildly Optimized Wellness podcast. If you're looking for new ways of thinking about your wellness, you can check out my website torerodriguez.com. Want to have a peek into what it's like to work with me? Check out the Wellness Curiosity Collective or any of my other programs or retreats. And if you found something helpful in today's episode, don't forget to leave a review hit that follow button or share it with a friend because they're gonna love that you thought of them. Until next time, See You Outside.
