Cerebral Venous Sinus Thrombosis: Symptoms and Causes

Cerebral venous sinus thrombosis (CVST) is a rare but serious condition characterized by the formation of a blood clot in the dural venous sinuses, which drain blood from the brain. Understanding the symptoms and causes of CVST is crucial for timely diagnosis and treatment.

Understanding Cerebral Venous Sinus Thrombosis

Cerebral venous sinus thrombosis occurs when a blood clot forms in the venous sinuses, preventing blood from draining out of the brain. This blockage can cause blood cells to break and leak into brain tissues, leading to hemorrhage. CVST can affect adults and children alike, with varying symptoms and causes.

Symptoms of Cerebral Venous Sinus Thrombosis

Headaches

Headaches are the most common symptom of CVST, occurring in 90% of cases. These headaches are often severe and persistent, differing from typical migraines or tension headaches.

Neurological Symptoms

Depending on the location and size of the clot, CVST can lead to various neurological symptoms:

• Seizures: Sudden, uncontrollable electrical disturbances in the brain can occur, presenting as convulsions or other types of seizures.
• Focal Neurological Deficits: These may include weakness, numbness, or vision problems, often affecting one side of the body.
• Altered Mental Status: Patients may experience confusion, lethargy, or coma in severe cases.

Other Symptoms

Other less common symptoms include:

• Nausea and Vomiting: Often associated with increased intracranial pressure.
• Papilledema: Swelling of the optic disc, visible during an eye examination.
• Difficulty Speaking or Understanding Speech: This can occur if the clot affects the areas of the brain responsible for language.

Causes of Cerebral Venous Sinus Thrombosis

Hypercoagulable States

Several conditions can increase the tendency for blood to clot, leading to CVST:

• Genetic Disorders: Conditions such as Factor V Leiden mutation and prothrombin gene mutation.
• Acquired Conditions: Antiphospholipid syndrome, a disorder in which the immune system mistakenly attacks normal proteins in the blood.

Infections

Certain infections can cause inflammation of the veins, leading to clot formation:

• Sinusitis: An infection of the sinus cavities.
• Meningitis: An infection of the membranes covering the brain and spinal cord.

Hormonal Factors

Hormonal changes can influence blood clotting:

• Pregnancy and Postpartum Period: The body’s clotting mechanism is naturally increased during and after pregnancy.
• Oral Contraceptives and Hormone Replacement Therapy: These can increase the risk of clot formation.

Medical Conditions

Certain medical conditions are associated with a higher risk of CVST:

• Cancer: Particularly hematological malignancies.
• Inflammatory Bowel Disease: Conditions like Crohn’s disease and ulcerative colitis.

Trauma and Surgery

Trauma to the head or neurosurgical procedures can also lead to CVST due to direct injury to the veins or secondary to inflammation and increased intracranial pressure.

Diagnosis and Treatment

Diagnostic Methods

Accurate diagnosis of CVST involves a combination of clinical evaluation and imaging studies:

• Magnetic Resonance Imaging (MRI): Often combined with Magnetic Resonance Venography (MRV) to visualize blood flow in the brain’s veins.
• Computed Tomography (CT) Scan: Useful in identifying brain hemorrhages and other abnormalities.

Treatment Options

Treatment aims to stop the clot from growing, reduce swelling, and prevent complications:

• Anticoagulant Therapy: Heparin or warfarin to prevent further clotting.
• Thrombolytic Therapy: Medications to dissolve clots in severe cases.
• Symptomatic Treatment: Managing seizures, headaches, and other symptoms.
• Surgical Intervention: Rarely, surgery may be needed to remove the clot or relieve pressure on the brain.

Prognosis and Long-term Management

Recovery and Follow-up

The prognosis for CVST varies depending on the size and location of the clot and the underlying cause. Many patients recover fully with appropriate treatment, but some may experience long-term neurological deficits. Regular follow-up is essential to monitor for recurrence and manage any ongoing symptoms.

Preventive Measures

Preventive measures include:

• Managing Risk Factors: Controlling conditions like hypertension, diabetes, and hyperlipidemia.
• Lifestyle Modifications: Regular exercise, a healthy diet, and avoiding smoking and excessive alcohol consumption.

Conclusion

Cerebral venous sinus thrombosis is a complex condition with a range of symptoms and causes. Early recognition and treatment are crucial to improving outcomes. Awareness of the risk factors and preventive measures can help in reducing the incidence of this potentially life-threatening condition.

Episode 316 Interview With Jenna Muscat

Jenna shares her personal journey of having an ischemic stroke due to Cerebral Venous Sinus Thrombosis at a young age.

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Highlights:

00:00 Recovery After Stroke Patreon Page
02:05 Introduction
03:38 The Early Symptoms of Cerebral Venous Sinus Thrombosis
08:17 Birth Control Pill As A Possible Cause Of The Stroke
11:59 Prematurely Discharged From The Hospital
16:19 Dealing With The Emotional Recovery
27:01 Four Years After The Stroke
33:23 Stroke Being The Worst And The Best Thing That Happened
40:00 Moving Forward After A Stroke
47:13 Taking Chances
53:49 Making A Difference In The World Of Stroke Recovery
59:07 The Hardest Thing About Stroke
1:03:23 The Lessons From The Stroke
1:09:23 Finding A Therapist

Transcript:

Recovery After Stroke Patreon Page

Bill Gasiamis 0:00
Hello everyone. I thought it would be a good time to let you know that recently, I set up a Patreon page. The purpose was to get some support to help cover some of the costs of the recovery after stroke podcast. Since 2017 I’ve been covering all the costs to keep this podcast running, but now I’m reaching out to our amazing community for a little help.

Bill Gasiamis 0:24
By subscribing to our Patreon, you’re directly supporting the ongoing production of the podcast. Your contribution helps cover essential costs related to recording, editing and hosting, ensuring the podcast remains available to every stroke survivor who needs it.

Bill Gasiamis 0:43
Your support will help us continue to transcribe each episode into subtitles for the YouTube version of the show, ensuring accessibility for listeners with hearing challenges. Our dedicated virtual assistant in the Philippines spends around four hours transcribing each episode and handles various behind-the-scenes tasks that keep the podcast running smoothly.

Bill Gasiamis 1:08
Your contribution will also cover the ongoing costs of monthly website hosting regular maintenance and storage for new episodes. This ensures that the podcast continues to operate smoothly and remains accessible to everyone in the community, as well as helping me with my goal to build the largest database of interviews with stroke survivors in the world, so no stroke survivor ever has to think that they are alone on the recovery journey.

Bill Gasiamis 1:38
Membership starts at $5 a month, and you can join our Patreon community by going to www.patreon.com/recoveryafterstroke today and help us continue providing valuable content for stroke survivors and their families. Your support makes a world of difference. Thank you for your generosity.

Introduction – Cerebral Venous Sinus Thrombosis

Bill Gasiamis 2:05
This is episode 316 of the recovery after stroke podcast today, we have an extraordinary story of resilience and transformation as we chat with Jenna Muscat. At just 22 years old. Jenna experienced an ischemic stroke due to a cerebral venous sinus thrombosis, a life-altering event that reshaped her future.

Bill Gasiamis 2:30
Join us as Jenna shares her remarkable journey of overcoming this challenge, navigating the complexities of stroke recovery and addressing mental health struggles, from facing intense fear and anxiety to finding strength in vulnerability and advocacy.

Bill Gasiamis 2:46
Jenna’s story is a testament to the power of perseverance and community support. Let’s dive into Jenna’s inspiring recovery story and learn how she continues to thrive and inspire others in their path to stroke recovery. Jenna Muscat, welcome to the podcast.

Jenna Muscat 3:05
Thank you. Thanks for having me.

Bill Gasiamis 3:08
My pleasure. Thanks for being here. Tell me a little bit about what happened to you.

Jenna Muscat 3:12
So I was 24 when I had my stroke. I’m 28 now, so it was almost four years ago. It’ll be four years in late August, early September. But essentially, I was just a very happy 24-year-old. I was a month away from graduating with my master’s from Pepperdine in behavioral psychology, I had a great job, I was just doing really well in life, and everything was going fine for me.

The Early Symptoms of Cerebral Venous Sinus Thrombosis

Jenna Muscat 3:38
And then one day I woke up with a headache. And I kind of got headaches a lot, so it wasn’t out of the ordinary for me, but this headache was very different, and it didn’t respond to, you know, any kind of medication. I went to the emergency room. They gave me a pain shot, sent me home, took the edge off, just the slightest bit, went back the next day, and the headaches just increasing during this time.

Jenna Muscat 4:04
They do the same thing, give me a pain shot, send me home, I sleep, I wake up, same thing, but now I have just extreme nausea, just throwing absolutely everything up. So I go back to the emergency room, and they do a braid scan on me, just a CT scan, no scans of contrast or anything. It comes back fine. They say, like, look, at this point, you just have a migraine and you’re really anxious. So here is some valium, and they send me home. And then some other really scary symptoms started showing up, just like a loss of balance. I couldn’t really walk.

Jenna Muscat 4:48
My hearing started to go out, I had really bad tinnitus in my ears, my vision started to go out. My peripheral vision was almost completely gone, and I would move my head in any position, if I would stand up, sit down. It would go completely dark for, you know, 10 seconds.

Jenna Muscat 5:05
I couldn’t figure out how to do things such as open doors. I would go up to a door and feel all over it and have no idea what to do to open it. But I couldn’t even connect the dots in my mind that I didn’t know what to do. So at this point, my dad said, I’m taking you back to the hospital. And I was in my room at the time, and he said, wait here, I’m going to go get my keys and we’ll take you to the hospital.

Jenna Muscat 5:30
And during that time, I guess I thought I could go to the bathroom by myself. And I don’t really know what happened after that, but I woke up on the floor in the bathroom, and my dad was like, trying to shake me to get me to wake up. So, not really sure what happened there. But after that, took me to the emergency room, they still didn’t really want to admit me honestly, because I had just had a clean brain scan the night before.

Jenna Muscat 5:57
And they were pretty certain at this point that it was anxiety. Because I will say, like at this point, my anxiety was super bad with the symptoms I was having, and everyone telling me I was fine, but they did agree to admit me, and then the next morning, they ran just a whole battery of tests. The first scan they did was a CTA angiogram with contrast, and about five minutes after that scan was done, I had multiple doctors rush into my room, and I knew as soon as that happened, like something’s not right.

Jenna Muscat 6:34
And the doctor that came in looked at me, and she goes, are you on birth control pills? And I was really confused. I was like, yeah, why? Like, they were actually sitting on my hospital table because I had been so sick the days before, I had forgotten to take them. And she goes, you can never take them again in your life. And I was just so confused. I had no idea what she was talking about.

Jenna Muscat 6:54
And I remember looking at my dad, my dad, looking at me, us looking at her. She was like, your brain is full of massive blood clots, you’re having a stroke, she said, the scan of your head also picked up the top parts of your lungs. And you’re also having a pulmonary embolism. They said, we need to get you to the ICU right now to start treatment, and from there, it was just kind of a blur.

Jenna Muscat 7:18
I was in the hospital for about a week on anti-coagulation treatment, IV Heparin, trying to break up some of the clot in my brain. And I had to go through a bunch of blood tests before I could transition to oral blood thinners and go home. But it was a lot. And then when I was in the hospital, they did an additional scan of my entire lungs and found an additional pulmonary embolism. But, yeah, that’s kind of my stroke and what happened to me.

Bill Gasiamis 7:51
Oh my gosh, yeah, that’s intense. I’m just listening to it and thinking, surely they checked her, surely they did this, surely they did that. But what they did is they judged you on your external appearance. They said she’s young, she looks fine, she doesn’t have slurring, she doesn’t have a droopy face, you know, so it’s probably nothing.

Birth Control Pill As A Possible Cause Of Cerebral Venous Sinus Thrombosis

Jenna Muscat 8:16
Yeah, and I think that’s been like, kind of the hardest part for me is just, I’ll never be able to wrap my head around like how me going to the emergency room with these symptoms and then having my medication list knowing I’m on hormonal birth control pills, how no one thought maybe we should check to make sure it’s not a stroke.

Bill Gasiamis 8:38
I think one of the reasons is because of the hormonal birth control pill is very rarely connected to stroke. So on the back of the pack, it says all the different side effects, and you know, stroke is one of them, but nobody really has that conversation and actually talks about it. It’s so commonly used by so many women that nobody really thinks about it like that. And most women haven’t had a stroke.

Jenna Muscat 9:06
Yeah, and if you do, you know, know about it, you never think it’s going to happen to you. Every pill has a side effect, anywhere from rash to like, of course, that’s not going to happen to you, but it’s going to happen to someone, and it could be you, and it was me.

Bill Gasiamis 9:19
I’ve been doing these interviews now for about 312 episodes, something like that. And the amount of women that I’ve spoken to who have had a stroke, who were around your age, and say, up until their mid 30s, because, well, nobody said it was because of the birth control pill, but who were on a birth control pill.

Jenna Muscat 9:41
Yeah you can’t definitively say so I’ve learned this. You can’t definitively say because there’s obviously no test to confirm it. It’s just a process of elimination from things you can test for, which I think also makes people downplay the role of birth control because there is no test to confirm it.

Jenna Muscat 9:59
So, you know, people will speculate, well, you can’t prove that, but you know, I had every blood test in the book trying to identify why this happened to me, from, you know, genetic factors to autoimmune disorders to cancer. I had every test in the book, none of it was flagged, like my only risk factor was hormonal birth control pills. But I think because you can’t put a definitive, you know, diagnosis on that, like people just downplay it, and no one takes it seriously.

Bill Gasiamis 10:31
And also, what they don’t do is, when they prescribe the birth control pill, is they don’t do genetic testing to see if the person has a blood clotting disorder, and therefore, if that person does and they’re on birth control pill, the risk of having clots occur because of the fact that they are both genetically predispositioned to it, and also then on the birth control pill, then the chances of having blood clots goes through the roof. So did you have an underlying physical reason as to the potential for blood clots?

Jenna Muscat 11:12
When I had my stroke? No, not to my knowledge, I did not have any kind of underlying clotting disorders. After my stroke, I had a whole hematology panel done by a hematologist testing for, you know, just like what we’re talking about, any kind of genetic factor, anything about me that would make me more prone to blood clotting, and all of those tests came back normal. So I’m just one of the very unlucky people.

Bill Gasiamis 11:36
Yeah, indeed. How long did you spend in the hospital?

Jenna Muscat 11:41
I was in the hospital in the ICU for about a week, but the onset of my symptoms from when they started to when I got in the hospital and they finally agreed to admit me was about a week as well.

Bill Gasiamis 11:55
And then you went straight home, or did you have to deal with some deficits that you had to overcome?

Prematurely Discharged From The Hospital

Jenna Muscat 12:00
I went straight home, I will say I was very lucky in my physical recovery from my stroke. There really was no lasting physical or cognitive impairments, which I am eternally grateful for, obviously. So after I was able to transition to Eliquis, which is a blood thinner in pill form, I was able to go home, and I kind of thought that once they sent me home, that meant that I was fine and I wasn’t fine.

Jenna Muscat 12:30
And I think that’s kind of where my mental battles started, is they sent me home, and I was still in an extraordinary amount of pain. I still had the same symptoms I had when I was in the hospital, because at the end of the day, I still had something in my brain that wasn’t supposed to be there, that clot didn’t just magically go away, it was still there, so all my symptoms were also still there, and it was honestly terrifying.

Bill Gasiamis 12:53
So you’re thinking, this is how I felt when I went to hospital. Now I’m at home, and I’m feeling the same, and it’s supposedly everything’s going to be better, and I also got these plots within me, and you’re probably wondering, what does that mean for my future?

Jenna Muscat 13:11
Yeah, I kind of felt like I was made of glass. I just thought, you know, at any point, I was just going to drop dead, and it was like this massive weight on me that I’ll never be able to put into words. But throughout my whole recovery, and, you know, honestly, almost four years later, even now, I still struggle with just feeling like the sky is about to fall on top of me, because that’s what happened before.

Intro 13:38
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

Intro 14:02
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com. Where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.

Intro 14:22
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.

Jenna Muscat 14:40
And everyone told me I was fine, and every medical test said I was fine, and all of those people and tests were wrong. So now it’s like, I don’t trust myself, I don’t trust my body, and I certainly don’t trust doctors.

Bill Gasiamis 14:55
Yeah, that’s a shame. Your education and the particular field that you were studying in, was it psychology?

Jenna Muscat 15:10
Behavioral psychology.

Bill Gasiamis 15:13
So now you kind of have an insight, or you have an understanding of kind of how people go about behaving, making decisions, all that kind of stuff. Are you using what you learned in the past to kind of get your head around, to wrap your head around all the decisions that were made at the hospital? Are you overthinking that part of it? Where are you at with that whole experience?

Jenna Muscat 15:36
So basically, my job in behavioral psychology is I kind of decide for why people do what they do, because there’s always a reason or a function for our behavior, and it’ll always haunt me looking back like, what is it about me that made these doctors not care about my life? What did I say? What did I look like what was it that made it not worth it to them? And it’s definitely something that’s haunted me and that I’ve thought on a lot, you know, over these past four years. And you’d think that those feelings and, you know, wonders in your head would eventually subside, but they don’t.

Dealing With Emotional Recovery After Cerebral Venous Sinus Thrombosis

Bill Gasiamis 16:20
Yeah, it’s not you, so it sounds like you’ve taken it personally.

Jenna Muscat 16:27
You know, at first I did, I will say, like, when my stroke first happened to me, I didn’t know anything about strokes. I didn’t know anything. And so I thought that, you know, in the way I was diagnosed, the way I was kind of treated initially in the hospital, I thought I had a really bad experience, so I was like, you know, it’s fine. These things happen, like I just had a bad experience, and that’s okay I can take that and I’ll be fine.

Jenna Muscat 16:51
But after I started recovering, I joined support groups, I started advocating on social media and connecting with other survivors, and very quickly, I learned that I didn’t have a bad experience. I had a very normal experience, especially for young women. And I think I kind of thought there would be some sort of closure in that, like, I’m not the only one that dealt with it, but it almost was worse, because I was like, this is just how it is like, how do we fix this?

Jenna Muscat 17:21
So if this happened to me and all of these other people, it’s gonna keep happening, and not everyone’s gonna have as good of an outcome as I did, and it just honestly was very heavy because I didn’t know what to do to fix it. It’s like when it’s a problem that’s this big and this systematic, you know, it’s the systematic failure of our healthcare system. How, how do you fix a problem that big, like, I’m one person whose voice didn’t matter when I was in the hospital, you know, how do I fix it?

Bill Gasiamis 17:55
And you’d think that your voice would matter when you go into hospital, say, I’m feeling this, and I’m feeling that, and I’m experiencing this.

Jenna Muscat 18:00
When you go to the hospital, you expect the doctors to do their job. You expect them to take you seriously. And I felt like because I was a young woman complaining of head pain that had a seemingly clear CT scan, she must be fine. She must just be anxious. And I was brushed aside, and that sucked, honestly.

Bill Gasiamis 18:31
Big time, your experience is not uncommon. For women, probably, my experience as far as a man that goes right. I can only speak about that, but also anecdotally, what people have told me who I’ve interviewed, it’s been a cross section of the community, be it males, females, white, black, Asian, doesn’t matter. Like there’s been lots of people who I’ve interviewed who said I went to the hospital, I told them what I was feeling, and they said you’ve got a migraine.

Bill Gasiamis 18:59
Or at your age, they said you were drunk, or you’re taking some drugs. You know, what drugs have you taken that kind of stuff, and people were made to wait, etc. To be as lucky to be able to go back time and time again. You know, that should have been a red flag for them. But I think one of the challenges is that at the medical systems, all of them, doesn’t matter who I speak to, doesn’t matter what country they’re in, are all under pressure.

Bill Gasiamis 19:29
They’re all lacking funding, they’re all dealing with too many people, they’re all overworked. You know, they’re all stressed. They all got those things, and what they would prefer is to have one less patient. And if you know, they see X amount of patients that come in that fit your description, that have had a headache, and it kind of wasn’t nothing, and they managed to give you some painkillers and send you away and got you off their books, so to speak.

Bill Gasiamis 19:55
That made their work day a little bit easier. And it’s not personal obviously, and it’s probably not malpractice or anything like that, but it is probably an attempt to decrease their workload and just deal with supposedly, “people who are worse off” than you or need more help than you, right? So then it’s about patient advocacy, right?

Bill Gasiamis 20:26
It’s, how does a patient go into the hospital and know that they have to advocate for themselves? So you know, you’re in your 20s, you’ve never had a stroke before, you’ve never been unwell before, and how are you possibly going to know that what you need to do is go back and insist, no, there’s something that is wrong with me.

Jenna Muscat 20:46
I think that’s my biggest thing now, is, had I had the knowledge then that I have now about strokes and about, you know, the risk of birth controls, it wouldn’t have changed anything. I would have still gone on birth control. Everything has side effects, but I would have been able to better advocate for myself and get myself treatment faster. I would have known the things to say, I would have known the test to ask for.

Jenna Muscat 21:08
You assume that the doctors will do that for you. But, you know, obviously that’s not always the case, and so my biggest thing is just increasing awareness and helping educate people that that this can happen. You know, none of the advocacy work I do is to stray people away from birth control pills. I think it’s a great resource for so many women, but I think you know, knowledge is power, and it can save your life, and I want everyone else to have the knowledge that I didn’t have when it happened to me, because it would have really changed things.

Bill Gasiamis 21:38
Do you have other people that you know in your circle that are on the birth control pill? And have you guys had a chat about that, or has it not been appropriate?

Jenna Muscat 21:52
I mean, I talk with anyone about my experience, and I will never, you know, still to this day, I don’t think birth control is evil. I think it’s a great resource for so many women. I think there needs to be more conversations around the risks and the side effects. Think there needs to be more education on that. And that’s my biggest thing. I never want to tell people it’s bad or it’s wrong, but I want to tell people that this can happen to you.

Jenna Muscat 22:14
This is how to recognize it, and this is what you do about it. So that’s my biggest thing. And I think that’s a big misconception people have, is that, you know, I just think it’s this evil, horrible thing that everyone should get off of. And that’s very much not true. I just wish that everyone had the education that I wish I had back then, so that everyone can make the decisions that are right for them.

Bill Gasiamis 22:37
And also, I think it’s important if somebody’s going to go down that path is that they understand that perhaps they need to do some testing to see whether or not they have a blood clotting disorder to ensure that they are.

Jenna Muscat 22:53
Most of the you know, people I’ve connected with that have had strokes. A lot of them have had these underlying genetic conditions, or, you know, autoimmune disorders that increase their risk of clotting, and they didn’t know it till something bad happened. So I’m like, Okay, well, do we need to test everyone for these disorders, you know, before we put them on hormonal birth control pills. Like, maybe, let’s have a conversation about that. Because even though that wasn’t the case for me, that’s the case for a lot of people.

Bill Gasiamis 23:22
Yeah, I think it needs to be part of the “Here’s the prescription, and also here’s some information about other conditions that you need to be aware of, that you need to take some action on. Perhaps you need to investigate the possibility that you need to learn about yourself, your body, and what is happening in your body before you go down the path of adding a complication to it while you’re trying to do this good thing, you’re trying to be proactive and prevent unnecessary or unwanted pregnancy.

Bill Gasiamis 24:04
So you want to do the right thing, you’re taking the right steps, you’re doing all the right things. And then yet, I feel like missing a key bit of information for somebody who’s about doing the right thing, who’s trying to make the right choice. And that’s really the part that frustrates me when I speak to women who’ve had a stroke and they were in the birth control pill, and there’s also that whole, “we don’t really think it was that, and it probably wasn’t that”.

Bill Gasiamis 24:39
And it’s a real challenging scenario like I find it very difficult to hear. Just a quick break, and we’ll be right back to the interview. Now just imagine a life where the impossible becomes possible, where the challenges of stroke recovery transform into a story of triumph and growth. Well, this is my story, and I’ve captured it all in my new book, The Unexpected Way That A Stroke Became The Best Thing That Happened.

Bill Gasiamis 25:07
I know firsthand the emotional roller coaster of stroke recovery, the fear, the uncertainty, the frustration. I’ve been there and through my journey, I discovered that a stroke, while devastating, could become a catalyst for profound personal growth and positive change. In this book, I share my deeply personal story and that of another nine stroke survivors, offering you a road map to not only navigate your recovery, but to thrive in ways you never thought possible.

Bill Gasiamis 25:38
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Jenna Muscat 26:18
It is. And I mean, even you know, I dealt with that. I went to a cardiologist maybe six months after my stroke to, you know, dive a bit deeper into my pulmonary embolisms I had, and he was very adamant, like, I just don’t believe this was cause for birth control pills. And, you know, he had all my medical tests and it was, you know, the proof was there. Like, I have nothing else going on, but he still just would not admit that that was the issue.

Jenna Muscat 26:18
And that also was hard for me, because it was like, well, is there something else wrong with me? You know, I’m already dealing with this insane amount of health anxiety, and now I have this other doctor in my ear telling me again, not to trust these other tests, that there’s probably something else going on. And it’s hard.

Four Years After The Cerebral Venous Sinus Thrombosis

Bill Gasiamis 27:01
Yeah, you’re four years out. How is your health now? Like, where are you actually at with your health? Is there any more blood clots in there? Have they been gone? Are they gone? Where are you at?

Jenna Muscat 27:15
So I was getting regular brain scans for about a year after my stroke every couple months to check in on the status of the clots in my head. From the beginning, my neurologist told me that there’s a high likelihood they’re never fully going away, going to go away, because he said what happens is blood clots will calcify, and basically your body will form new blood vessels around it, and at that point, it’s pretty clinically insignificant, but they’re still there.

Jenna Muscat 27:40
And that’s what ended up happening for me, is my clots did calcify in my brain. Some of them did go away, but my main one is still there. And about a year after my stroke, I had already gotten off blood thinners, because at that point it was clear it wasn’t going to break it up any farther, and the risk of staying on them outweighed the risk of coming off, especially since I was found to have no other clotting conditions, I was given the green light to come off blood thinners, being that I was no longer on hormonal birth control pills, obviously.

Jenna Muscat 28:15
But I will say, you know, my mental health really took a big hit with all of this, and my health anxiety was crippling and paralyzing and horrible, and I thought every time I got one of my brain scans that it was going to tell me if I was going to live or die. There was absolutely no relief that came with good news, because I didn’t believe it, because my scans were wrong the first time.

Jenna Muscat 28:39
So I, you know, made the decision with my doctor to forego any additional scans unless something you know changed, if I had new symptoms come up. So per my last scan, my clots still there, I have new blood vessels around it with great blood flow. So that’s good. Besides that, my health is pretty good. I will say the kind of health anxiety from this and my just aversion to doctors and hospitals has made me skip a lot of doctors appointments.

Jenna Muscat 29:10
And things that I should be keeping up with to check on my health. So that’s something I’m still really working through. My mental health is an ongoing battle. You know, the PTSD from a stroke is very, very real. And I don’t think enough people, talk about it.

Bill Gasiamis 29:31
No, they certainly do not. It’s the thing about stroke, like it’s the gift that keeps on giving. It’s just so ongoing. It’s not funny. You know, I’m 12 years out, and a few months ago I did my book launch, about six weeks ago, I did my book launch, and I had this speech prepared, and this presentation and everything, I got up there, literally within about three minutes, I was crying in front of all the people who I was doing this presentation to.

Bill Gasiamis 30:02
Just the discussion of the process, the thing that I went through at the very beginning, 12 years ago, triggered this emotion that I thought kind of was not really there, not in that way, you know, like not that raw, and I couldn’t control it. And anyway, I took a few deep breaths, and I kept going. And then, sure enough, you know, few minutes in further down into the presentation, you know, it happened again, and it happened again.

Bill Gasiamis 30:34
And I just couldn’t understand, no, I can understand it, but I I thought that I had moved beyond that phase of my mental health recovery, and I have a long way, like I’ve come a long way, like heaps, but still, it could be the right day in the right place and the right audience, and it’s just sets me off. And then, I’m wondering, like how did I get here? And then, and then I realized, Okay, well, I’ve got more work to do. There’s way more work to do.

Jenna Muscat 31:16
Yeah, I think I’ve learned at this point that, you know, I always told myself when I was recovering from my stroke, I was like, if I can just get, like, the green light for the doctor to come off blood thinners, if I can just get a good brain scan. Like, I kept telling myself these milestones, like, if I can do this, then I’ll feel better. And then one by one, I hit all those milestones and I had never felt worse.

Jenna Muscat 31:36
And I think it was that realization like, this is never going to go away, and this is just going to be a part of me, and I have to accept that and learn, how am I going to take this thing that has seemingly like destroyed my life and broken me down, and how am I going to make it the thing that makes me stronger? And yeah, it’s hard.

Bill Gasiamis 32:01
Being so young. And I’m only saying this because I remember how thick I was when I was around 21, 22 years old. Like being so young and having just sort of finished school and all the things that you do when you’re coming into adulthood, do you feel like you are under equipped to deal with that kind of a situation just because of your lack of life experience?

Jenna Muscat 32:30
I don’t know that. Under equipped is what I would say, unprepared. I think when you’re young, you feel invincible. I know for me, like I know bad things happen. I’ve seen them happen to people around me. You never think they’re going to happen to you, and then it does, and you very quickly realize that life is just incredibly unpredictable and like the most heartbreaking way, like you can be fine one second and got the neck gone the next.

Jenna Muscat 32:57
Like I remember when I lost consciousness in my bathroom before my dad found me like, I just remember everything going black, like I so just, like it was just I was there, and then nothing. And that could have been where that could have been where it ended. And I think facing death so young is, I think it’s a good and a bad thing. It’s a situation that I think altered my life in such a, you know, such a massive way.

Stroke Being The Worst And The Best Thing That Happened

Jenna Muscat 33:23
I’ll always say, like, my stroke is the worst thing that ever happened to me, and it’s the best. I wouldn’t take it back. It was hell. But I think I’m a better person because of it. I think I live my life in a much better way now. It affects every decision I make now, because it’s like, I know what it’s like to lay in a hospital bed and to have like, these end-of-life regrets, almost thinking that you’re going to die.

Jenna Muscat 33:48
Like I so distinctly remember lying in the emergency room. My dad was there. He was talking to the doctors, and I so distinctly remember thinking like, oh my god, I’m going to ruin my family’s life. Like I remember thinking that I was just this, like a cannonball that was just going to implode and just hurt everyone around me. And I remember going through my family and thinking, what is my brother going to do when I’m gone? What about my mom? What about my dad? Like, are they ever going to be okay again?

Jenna Muscat 34:19
And that is something like that honestly haunts me a lot, like having those thoughts, but I think it’s also just changed me in such a good way. So I’m never one to to like to sugar coat things, or I don’t like just like toxic positivity, but I think if you can take something really bad that happened, you would find the good in it, then there’s nothing toxic about it. I think that’s just making the most of it. So

Bill Gasiamis 34:45
I love your concern about other people, like in the worst time of your life, you’re concerned about other people, and it reminds me.

Jenna Muscat 34:56
I so distinctly remember it too, like I just remember the chaos ensuing around me at this point, like, honestly, I had accepted that I was going to die, like it wasn’t a question, like I thought I was going to die. And I just remember thinking like, my dad, he had just bought a piece of land in Utah to build his dream house that he had talked about our whole life, that he had worked so hard for.

Jenna Muscat 35:16
He had just bought a piece of land three weeks earlier. And I remember thinking like, is he still going to build the house once I’m gone? I remember thinking like, I hope he still builds it. And I think that was the hardest thing, is just thinking that I was just going to ruin the people around me, and I wouldn’t be here to pick up the pieces. And that was hard.

Bill Gasiamis 35:36
I can’t imagine how hard it is. My particular experience was similar. So I’m sitting there lying in the hospital, and, you know, we’ve got a large Greek family. Everyone loses their shit as soon as something’s wrong with somebody, right? And then what happened was, for me, they had to tell the parents and the grandparents and sorry, my parents and the extended family, my in laws and all that kind of stuff.

Bill Gasiamis 36:04
And they all, you know, just panicked, and they all go nuts. And then I remember thinking like, I’ve gotta pretend that I’m better than I am, because if I appear to be better than I am, then hopefully they can all remain calm, and the more calm they are, the more calm I can be, and then we can have a better, more calmer approach to the whole what the hell’s going on, you know, situation in those very early days.

Bill Gasiamis 36:36
And the thing about me is they thought nothing of it initially, because I played it down as much as I possibly could. But then six weeks later, when I had another bleed, well, then that kind of threw a spanner in the works. And then my plan to stay calm and pretend that I’m okay, and all that kind of stuff went out the window. And then when it happened again, almost two and a half, three years later for the third time, then it was like, sorry guys, like, I’ve let you down.

Bill Gasiamis 37:05
I’ve pretended that everything’s okay, but it’s probably not. And then we had to do brain surgery, and then it’s like throwing them again into the deep end of crazy emotions, like, what’s going on? Where are we at with this thing, and why you still unwell, and how serious is this? And then waking up from brain surgery, not being able to walk again, it not being able to walk initially, and then learning to walk again, and all that kind of stuff.

Bill Gasiamis 37:33
And I feel like, the whole thing was about how do I keep them not being traumatized by this while I’m being traumatized by it the whole time? And then I thought about my kids and my wife, and it was ridiculous that I would even be doing that. I should be focusing on myself, but I couldn’t help it like you.

Jenna Muscat 38:02
It’s a lot, and I think a lot, you know, I think there’s such a negative connotation with being selfish, like we always just need to put other people first, but I think sometimes you have to put you first. And I think, you know, obviously, for me and you that’s something we struggle with, even if you know we’re the ones suffering from it, but at least in my perspective, I would rather myself suffer because I can control that. I don’t want someone else to suffer because I can’t control that.

Bill Gasiamis 38:31
I also love what you said a bit earlier about the fact that it’s the worst thing that happened to you and the best thing that happened to you, right? So I’m not sure if you know about my book.

Jenna Muscat 38:41
I did, and I caught the, what’s the book title? Again, something along those lines. The Unexpected Way That The Stroke Became The Best Thing That Happened. I mean, I completely agree. I completely agree not to take away from how horrible it was, because it was horrible, and it was awful and it was traumatizing, and I’ll live with it for the rest of my life, but I wouldn’t take it back.

Bill Gasiamis 39:04
It’s from a personal growth perspective, that it’s the best thing that happened to you, right? It’s clearly not from a medical perspective, right? No one’s saying, Yeah, let’s have a stroke, you know, like it’s going to be fun.

Jenna Muscat 39:15
Yeah I know, I would not recommend. But I mean, I think if you’re able to take that perspective and use it to your advantage, like your stroke can either make you or break you. You can let it be the anchor that sinks you, or you can let it be the thing that makes you better than you were before. And I don’t think it’s always that black and white, like I’m not saying this, as if I have this, you know, philosophical approach to everything, and I don’t still have hard days, like I’m on so many anxiety medications trying to control my health anxiety, I cry about my stroke, I have nightmares where I wake up and dripping sweat feeling like I’m paralyzed again. But you know, still, we persist and we move forward, because what else are you going to do?

Moving Forward After The Cerebral Venous Sinus Thrombosis

Bill Gasiamis 40:00
Absolutely nothing. You can’t curl up in a ball and capitulate. You definitely can’t do that. There is no point in that. That whole thing we spoke about that’s going to make your family even more uncomfortable and feel bad about the whole situation and not know what to do and be worried about you. So I think learning about what you can do to get better and overcome the things that you need to overcome, and then accepting the things that you can’t overcome.

Bill Gasiamis 40:31
You know, that’s really what the game is about. It’s about what do you do to take the next step forward, even though you’ve had a number of setbacks, and you’re taking those knocks, and then you’re end up 10 steps back, or 50 steps back, and then you gotta go forward. It’s like, I’m always what can I do to take me the next step forward? The podcast was that first, it wasn’t the first thing.

Bill Gasiamis 40:55
The first thing I did to take a step forward was get up and talk on behalf of the Stroke Foundation and do stroke prevention talks I did that year one after that, I used to do, I used to I went and got personal development courses that I attended so that I could develop my skills and work on my emotions and find new ways to navigate my daily life, right?

Bill Gasiamis 40:55
And to achieve some of my goals. Then somebody gave me a challenge and said to me, maybe you want to share what you’ve been learning. How do you want to share that? And I thought, I’ll just do that in my local community. I’ll do some talks or whatever. And then they gave me the challenge of, well, there’s this thing called the internet, you know, so why don’t you share it on the internet, right? And then I thought, Okay, I’ll do that. And I started the podcast, and then I wrote the book.

Bill Gasiamis 41:45
Like all the things that I’ve done are all about me looking for the next thing to help me get to the next thing that’s going to make me feel better, deal with this better, feel like it was, what’s the word? Like, uh, like, it was a thing that happened to me so that it could kick my butt, so that I could move, get on with things right, so I could take some positive steps in the right direction.

Bill Gasiamis 42:13
Not that I wasn’t. But want to compare myself today to the guy that I was before, like, a pretty mundane kind of boring kind of guy still doing all the amazing things like raising a family and working and meeting with friends and all that kind of stuff, but there was no real substance.

Jenna Muscat 42:33
I’m definitely the same way I look at myself before and I was such a wallflower, I walked into a room, and almost apologized for being there. I saw great things happen to my friends. I never thought they were going to happen for me. I never put myself out there. I was scared of failure, rejection, and those are all still things I struggle with. But now I just do everything scared, and I do it anyway, because it’s like I’d rather do that than do nothing.

Jenna Muscat 43:02
I think, you know, after I had my stroke in the hospital, you know, you think on your life, right? You think of these like end of life regrets, almost, and like almost everything I regretted was things I hadn’t done, things I was too scared to do. And so now I try to use that to change how I live my life now. And it doesn’t always abide by that I still struggle with being scared of you know, so many things, but you know, you try your best to work through it and to not make the same mistakes you made before.

Bill Gasiamis 43:28
I love the fact that you said that like you do it scared anyway.

Jenna Muscat 43:34
Do it scared. I mean, do it scared or don’t do it at all. What are you going to regret more?

Bill Gasiamis 43:40
And what have you learned like about fear?

Jenna Muscat 43:44
I’ve learned that fear. I think a lot of people don’t truly understand what fear is right, because we always think, Oh, I’m scared to do this. I’m scared to do that. But then something that happens in your life that shows you what fear really is right, like nearly dying, and then you realize that that kind of fear is, you know, the fear of rejection is nothing compared to that.

Jenna Muscat 44:05
Like, you know, you think about it and like it’s also insignificant, like we’re literally, like, on a floating rock in the middle of space, like it’s not that serious. And I think, you know, this sounds also philosophical, and I promise, I’m not always like that, and I still struggle immensely with putting myself out there and taking risks and chances, but I’m working on it.

Bill Gasiamis 44:29
Yeah, it’s good to have bouts of philosophy to stuff everything up right, and to like, test you, and to make you make a choice and make a decision that you struggled to make for such a long time.

Jenna Muscat 44:43
Like pushing the baby bird out of the nest and saying fly, I’ll probably hit the ground, but that’s fine. I’ll try again. Or, you know, I’ll get up tomorrow, you know, I’ll have an hour, and I’ll cry about it, but then we’ll move on. I think that’s my biggest thing now, is whenever I do something. I’m like, well, this could go horribly, this could blow up in my face. And before, I would have just not done it. But now I’m like, well, I’ll do it. And if it does blow up in my face, then I will deal with that then. I’m very much so now I will cross that bridge when I get there, instead of just being scared to cross it at all. That’s a gift that I’m so thankful for.

Bill Gasiamis 45:25
It’s way better to be that way instead of kind of being worried and concerned about what might happen that may never happen, right? You worry about all these things. For example, I’m doing a presentation in about a month at a Stroke Conference, and it’s about my book, but I have to deliver it kind of in a scientific way they don’t want me to go there and talk about my book. I’ve got 12 minutes, that’s all.

Bill Gasiamis 45:51
And you know, when I signed up for that, I hadn’t done the book launch yet, and as a result of that, after I cried at the book launch, I figured, oh my god, I’m going to be in a room in front of clinicians and all these people, and the last thing I want to be doing is crying. But I’ve accepted the fact that I’ve got to do the presentation regardless. I’ve signed up for I’ve been accepted, and I’ve got to accept the fact that I might cry, and I don’t know if it’s going to be a good day or not a good day, and I don’t know, but I’ve got to go for it. And what I found is crying in front of an audience anyway, that it sucks them in even further, like you don’t lose audience members when you cry. They empathize with you way, way more.

Jenna Muscat 46:44
You should never apologize for feeling your feelings, you know? Nothing good has ever come from suppressing them.

Bill Gasiamis 46:55
No, absolutely not, right. So that’s the thing, and it’s like, oh, well, I’ve already signed up, they’ve already accepted me. You know, what am I going to do? I’m not going to go and present on my book because there’s a slight chance I might cry, and the male ego in me doesn’t want to go down that path, you know, whatever.

Taking Chances

Jenna Muscat 47:12
But imagine yourself, you know, back in the hospital right after your stroke, knowing that years from now, you’re going to be worried about crying on a stage to give a presentation about what you’ve survived, and it doesn’t seem that heavy anymore. That’s actually pretty cool.

Bill Gasiamis 47:28
It doesn’t indeed, exactly. And then I do go back, and I do have those conversations with myself about end of life regrets, and they do come up those, if I don’t do this, this is going to be an end of life regret, like, what are you talking about? You’re not going to do it. And that’s kind of the good part about being in hospital with all the machines attached to me after having a blackout, after not knowing my name, not recognizing my wife.

Bill Gasiamis 47:55
You know that’s the good thing about it, is it’s like I got past that and for the time being, I’m going to make the most of the amount of time that I’ve got left. And everything I procrastinate doing before, procrastination used to win. Now procrastination doesn’t win. Everything I am afraid or procrastinate about doing, I find myself kind of in this weird mode that I get into.

Bill Gasiamis 47:55
Like, when I applied to do this, to present at this particular conference, it was just at a moment’s ridiculous time, like, I think I was watching TV. It was about nine o’clock in the evening, and I knew about this Stroke Conference that it was happening. I said to my wife, I’m just going to jump online for a second and go and apply for this particular presentation. It was like one of those types of moments in about 25 minutes after worrying about it or mulling it over in my head for a few weeks.

Bill Gasiamis 48:21
It was done and it was sent across, and then I forgot about it, and then I received an email X amount of weeks later, which said, Oh, by the way, you’ve been accepted. Please complete this form. And it’s like I have these crazy kind of moments where my head kind of switches off. Everything goes away, all the worrying parts of me kind of just they have a moment of quiet, and then the true me goes, alright, now’s the time pounce.

Bill Gasiamis 49:20
Go and fill out that form and apply for this thing and get it done. That’s how the book launch happened as well. The book launch happened because the lady whose Cafe it was and the guy who runs the cafe, they said to me, why don’t you do a book launch at our cafe? You know, we’ll give you the venue. You know, you can bring some people there, etc. I said, All right, that’s cool.

Bill Gasiamis 49:41
And I never thought anything of it. And then she booked it. She just said, we’re going to do this, and started promoting it. And then I was kind of like, oh, okay, all right. Then, yeah, thank you. I’ll make sure I turn up. So. So that’s kind of how it happens for me now. And I look back, what’s cool about that, Jenny, is I look back and I go, Oh my gosh, like you did that. Well done. You know, I really do pat myself on the back.

Jenna Muscat 50:11
Yeah, I get what you were saying about procrastination earlier. I mean, I think my biggest thing now is again, this sounds so philosophical, but like life is unpredictable. Don’t wait around to take the trips. Don’t wait around to tell the people you love that you love them. Don’t wait around for these perfect opportunities. Just do it now, life is short. It’s unpredictable. So if you have the opportunity and you can do the things you want now make it happen.

Bill Gasiamis 50:43
Yeah, 100% agree with you. Tell me about your Tiktok account. There’s almost 10,000 followers there. What kind of posts do you put up there? How has that helped you with your recovery? How has it helped when you found people that are like you?

Jenna Muscat 50:58
So I started making tiktoks about, maybe a year and a half, two years after my stroke, I started just making silly little tiktoks about my stroke, and it kind of just took off. And from there, I started answering people’s questions about strokes, and it turned into me just advocating about strokes, advocating about the risk of hormonal birth control pills, advocating for, you know, speaking up for yourself in a hospital, and how to advocate for yourself in a hospital.

Jenna Muscat 51:30
And I have connected with so many amazing people, and so many people that unfortunately have stories, you know, very similar to mine, or you know, they have family members who had, you know, stories similar to mine, but they didn’t have the outcome that I had, and I’ve been able to connect with some really great people that I still keep in touch with to this day.

Jenna Muscat 51:53
I think, I found a lot of comfort, it feels like that. If I’m making tiktoks and I’m educating people that I’m making a positive impact and taking this thing that happened to me, and even though I feel like the problem is so big, maybe I’m, you know, helping one person, and it’ll save one person’s life, or and my biggest thing is It keeps me up, and it haunts me that this is just going to keep happening to people. So if I can help raise awareness and give someone that knowledge, that I wish I had, then I can sleep a little better at night, and it makes me feel a little better about the whole situation.

Bill Gasiamis 52:35
You really are making a difference, and I know that because I’ve been doing this now since about 2017 but I’ve been doing it seriously, probably for the last three or four years, where I’m putting one episode a week out. And it was about six months ago, somebody reached out to me and said, credit where credit’s due. Because of one of your interviews, I avoided a stroke.

Bill Gasiamis 53:04
And I was like, tell me more, what happened. And she she had a vertebral artery dissection. Anyhow, she had a dissection in one of her arteries, and it caused a headache, a certain headache, and I don’t know what keyword she typed into Google search, but she typed the particular keyword that brought up a video that I did with another stroke survivor who had the exact same condition, and the interview was with a lady who was describing her symptoms, and this person found that video, listened to it and thought, oh, that’s kind of like me, but not similar, not exactly the same.

Making A Difference In The World Of Stroke Recovery

Bill Gasiamis 53:49
And then she went on to my YouTube channel and did a search for the particular videos in that playlist and found another one that was exactly like her symptoms. And then she told her husband to take her to the hospital. And they specifically told the doctors exactly what her condition was, what I’m experiencing, and I have a vertebral artery dissection. And of course, they would have thought that she was mad, but they scanned her head, and they found the dissection, and she completely avoided a blood clot forming and causing a stroke.

Jenna Muscat 54:31
That shows the importance of, you know, using your voice and your situation to advocate, because it does make a difference. That’s that’s what I hope comes from my situation, is I just, I don’t want anyone else to have to go through this.

Bill Gasiamis 54:49
It makes a difference. You may not know about it, because in the hundreds of 1000s of downloads that my podcast has had, that’s one person who’s actually reached out to say something I know a lot of people don’t reach out to say something, even though they might be having a positive experience, from watching a Tiktok or listening to a video, etc.

Bill Gasiamis 55:08
And that’s the cool thing about it, right? It really does make a difference. You may not have the evidence because somebody didn’t contact you, but 100% is, I know it makes people feel better, and that’s the good thing about socials and YouTube and all that kind of stuff. You know, people do get all upset and annoyed about some of the things that happen because of social media, but really, so many good things that come out of it. You’re using it for the perfect reason.

Jenna Muscat 55:38
I’ve had several people reach out to me and say, you know, since I’ve been on Tiktok, I think more young people are having strokes. And I was like, I don’t know that it’s more young people are having strokes, as if more young people are able to tell their stories now. Now you’re hearing about it, and I think that’s kind of the beauty of, you know, platforms such as Tiktok is you don’t just see posts from your friends. You see posts from strangers. You see the things that happen to them, and you’re able to learn about just people’s lives and the things they’ve gone through. And I think that that’s a really cool side of social media.

Bill Gasiamis 56:12
See, and there’s no other way that you could get in front of 934,000 other people when you wanted to share about the side effects of the hormonal birth control pill, like that video reached nearly a million views that’s so phenomenal, that is such a great thing, you know? And that’s potentially people in that group that are going to experience something and go, I think I remember hearing something about that somewhere, I better do something about this.

Jenna Muscat 56:46
That’s my biggest hope. Because I remember being in the hospital, and at the time, I had no idea what was happening to me, and it was terrifying. If I was able to think back to a Tiktok that I had seen that said, Oh, this one girl said this happened to her. Maybe that’s it. I could have said it to doctors. Maybe they would have been like, You’re crazy. You don’t know what you’re talking about, but let’s run that test to get her to shut up. That would have saved me a lot of time and a lot of trauma.

Bill Gasiamis 57:13
Yeah and then there’s that other video, women deserve better, right? Women’s Health is the hashtag that I’m seeing on that particular post, 2.3 million views on the fact that you’re saying I went to the hospital. I said this, and I said that, and they brushed it off, and they gave me valium instead of looking at my head and trying to work out what was going on. I mean, that is so powerful, because what that’s doing is telling people to trust their gut instincts that’s telling them to, you know, persist when they go to the doctor, to not just allow somebody to convince you that there’s nothing wrong with you when there in fact is.

Jenna Muscat 57:51
Exactly, I mean, I think the biggest thing is, like all you have in life is your voice and all you that’s all you have to advocate for yourself. And it’s really hard when you use that and it still doesn’t seem to do anything. And so I think that’s where we all just need to learn to advocate for ourselves and also, like, you know, maybe someone that works in a hospital will see my videos, and next time someone comes in complaining of a headache, they’ll think twice on it, you know, I I just hope something positive comes from it in whatever shape or form that might be.

Bill Gasiamis 58:28
I know it will. I definitely know it will. And then you’ve got another video there, 1.8 million views, like just those videos, 6 million views combined between those three videos where you’re talking about going to the ER doctor and the doctor again, you know, dismisses what you said. It’s just, it’s a great thing that you’re doing, and it is going to make a difference, and it is going to empower, give people, like an insight into what happens when they have a condition and they go to the hospital and something goes wrong.

The Hardest Thing About Cerebral Venous Sinus Thrombosis

Bill Gasiamis 59:07
It’s an awesome little Tiktok page there. And people who are listening and watching, there’ll be links in the show notes that you’ll be able to go to and connect with Jenna there and follow that Tiktok account. I think it’s really important that we follow it and then share, share those videos in our own communities to raise awareness. Tell me what was the hardest thing about stroke for you?

Jenna Muscat 59:34
The mental recovery, 100% I just, you know, always thought that once I was fine physically, that I would just be fine, and it was like, the healthier I got, the worse my mental health got. I mean, no one talks about that part of stroke recovery at all, but like I felt like I had survived a stroke just to have PTSD nearly killed me, like I felt just paralyzed by fear.

Jenna Muscat 1:00:01
I could not be by myself, I could not go to work, I thought the second that I stood up I was going to drop dead. There was no amount of doctor’s reassurance scans, reassurance tests, reassurance that convinced me otherwise. I was passing out in the MRI scanner machine getting my scans, because my anxiety was so bad, it was horrible, and I felt so alone.

Jenna Muscat 1:00:28
And it’s not that I didn’t have a great support system, because I had the best support system. My family and my friends were amazing, but I think at the end of the day, they just didn’t get it. Because I feel like to other people, it’s like, almost like you’re being dramatic, like you survived this, you’re fine, move on with your life, and it’s like, I would love to move on with my life, but I have never felt more, not fine before.

Jenna Muscat 1:00:54
And it was incredibly hard. It’s something I still deal with. Just about a year ago, it got really bad again, and it’s like, you know, it’s like, at this point, like, haven’t I given enough? Like, hasn’t this thing taken enough from me? And, you know, I have learned that this isn’t the last time I’m going to have hard days, I’m there’s going to be another point in my life where this health anxiety and the PTSD comes back and kicks me down.

Jenna Muscat 1:01:24
But I think what you know makes it a little easier each time is knowing that I’ve gotten through it before. It’s like when it’s bad every day is a bad day, and then slowly but surely, you start to have better days, until you don’t remember your last bad day, and then inevitably, you have another one. Because I’m certain at this point that healing isn’t this, you know, destination where you’re just fine.

Jenna Muscat 1:01:48
Like, I don’t think that that exists. I’m going to deal with this the rest of my life, and in some ways, that sucks, but you know, like, that’s okay. This is, you know, these are the cards that I was dealt, and I’m just going to make the best of it, and I’ll deal with those hard days when they come, and I’ll get through them.

Bill Gasiamis 1:02:06
You will. And as time goes, you’ll get better at dealing with them, and you’ll get more resilient, and you’ll grow a thicker armor, and you know, you’ll be able to really look back on it like I do, even though I have these, you know, bouts where it gets me, I look back on it as such a thing that happened so far away, like such a distance away that I almost can’t connect it to me anymore, because it’s so far away. I have all this proof that it happened, you know, scar on my head, a book, a podcast and all, but it happened so long ago, I can talk about it as if I’m sharing a story rather than something that happened to me. So it’s not re traumatizing me.

Jenna Muscat 1:02:54
When I think about it, it’s almost like it feels like a movie I watched or a book that I read, because I feel so different from that person that I was then that it almost just feels like a lifetime away, yet at the same time, still just like yesterday, but I just feel like I’m such a different person now, it’s like that couldn’t have happened to me but it did, and it’s weird, because you get in this weird place of having just such a distinct perspective about it.

The Lessons From The Stroke

Bill Gasiamis 1:03:25
And that’s the power in talking about it and connecting with other people. That’s the power, that’s not what you get from doing that. It might feel difficult at the time when you’re trying to go to those emotional spots and, you know, battle them and tackle them and talk about them. But eventually, what it turns into, it turns into like this distant memory that you reflect on, rather than re traumatizing yourself every time you speak about it. That’s kind of what I’ve got after 312 episodes or so. Tell me about what stroke has taught you.

Jenna Muscat 1:04:00
I think it’s taught me that life is very short, it’s very unpredictable. Just to cherish the now as as much as I you can and you could, that sounds so philosophical, but, yeah, life, life is very short. If you want to do something, do it now, you know, tell the people you love that you love them, and treat them like it, and do all the fun things you want to do, because you know, nothing’s guaranteed.

Jenna Muscat 1:04:31
It’s taught me that you know, as far as you know, health care has come. You still have a long way to go. I think, you know, it’s a whole another conversation about the side effects of birth control and why we aren’t doing more about that. But, yeah, I think, I think the biggest thing I’ve learned is just, life is short. It’s, painfully short and unpredictable. So. To do all the things you love and love the people you love, and enjoy it while you can, which sounds a little bit slower, but I don’t mean it in a morbid way like you’re going to die someday, but.

Bill Gasiamis 1:05:13
True, it’s still all true. What about there’s some people listening who are just on their journey. They’re starting out now, right? They’re looking for advice. Give them, you know, share some advice with somebody who might be going through something similar to what you’re going through.

Jenna Muscat 1:05:33
I wish that I had known that my mental health was going to suffer. I wish that I had known that post stroke, PTSD depression was something that most stroke survivors will deal with. I would say, get ahead of it. You’ve been through something very traumatic, maybe check out therapy like just get ahead of it and figure out what those supports are that you need, take care of your health, figure out what you need to do for yourself.

Jenna Muscat 1:06:02
You know, we talked earlier about, you know, worrying about how other people would react, like, figure out how what you need for yourself. And just know that, like, if you choose to, this can be the thing that makes you better. It can also be the thing that breaks you, and it will try to break you time and time again, but you’ve had the power to survive this, you also have the power to survive the aftermath.

Bill Gasiamis 1:06:30
Yeah, I love that part. That’s awesome, right? So I go to counseling irregularly now, but for many years, I went regularly once a month for many, many years, and now I just go kind of whenever I’m feeling like I need a bit of a top up. How are you dealing with all of that stuff, the PTSD and all that? Are you seeing somebody that is supporting you with that, other than the medication?

Jenna Muscat 1:06:57
Yeah so I’ve been in therapy. I started going to therapy about a year after my stroke, when my PTSD, really, you know, got really bad, and I think that was really important. I love to read couple books that I’ve read that are really good. What is it called the body keep score. Is one of the best books that I have ever read. It really helped me understand why it was my PTSD was making me feel the way that I was, and it just I’m the kind of person like I love knowledge.

Jenna Muscat 1:07:34
So understanding my anxiety was very big to me. I loved learning about anxiety, especially health anxiety, that that in particular. So therapy, reading, find what works for you. You know, not everyone is the same. Medication for me was life saving, and I will, you know, I know some people are want to steer away from that, but for me, it was something that I really needed.

Jenna Muscat 1:08:00
And you know, I’ve tried to get off it a couple times, thinking like, Oh, I’m doing better, and then quickly I’ll realize, like, if you weren’t doing better, the medicine was just doing what it was supposed to do. And that’s okay, because I think for a long time I, you know, had the mindset of, I don’t want to need this crutch for the rest of my life. But trauma is real, and it alters the chemistry of your brain, and sometimes you need a little extra chemical help to get through it, and that’s okay, and it doesn’t make you weak.

Bill Gasiamis 1:08:27
And you can keep trying to get off it as time goes. You can keep trying and keep trying, and it’s going to give you a good sense of where you’re at, and you then you’re going to be able to regroup, and you’re going to know what else you need to do and how much more work you need to do, and that’s okay. And I love what you said about that is that, you know, taking away that kind of stigma from being medicated to help with PTSD or anxiety.

Jenna Muscat 1:08:52
I know for me, like a big concern of mine, getting on medication was, well, this whole trauma that I’m dealing with was caused from a side effect of medication, and now I’m going to get on more medication. Like, what is this going to do to me? But, you know, it truly was such an amazing support for me, and still is, and I’m, you know, thankful for the life I live now, with the help of therapy and my friends and family and, you know, anxiety medication, it’s done wonders for me.

Finding A Therapist

Bill Gasiamis 1:09:24
Was it easy to find a therapist that you connected with? How do you sort of go about that? What was that like for you?

Jenna Muscat 1:09:33
Gosh, I think I’ve seen four therapists. I think it’s kind of like dating. You’ve got to find the right fit. And I think a lot of times, people can be discouraged because they go to therapy and it wasn’t good, but I feel like, you know you’ve got to find your right person, and then when you do that, like therapy is hard, it’s not always sunshine and rainbows, and you walk away feeling better.

Jenna Muscat 1:09:54
Sometimes it brings up really hard feelings and emotions, but it’s an ongoing process, and I would. You know, encourage anyone to stick with it and give it a chance to work. And also, like, if you try therapy and you don’t click with your therapist, shop around. Like, there’s a lot of really amazing people out there. And you know, there’s a variety of mental health issues that people people deal with. They’re not always going to find someone that clicks with what you need. But, you know, keep trying.

Bill Gasiamis 1:10:22
I think that’s really important. I know a lot of people say, you know, I’ve been to one therapist and no good. I’ve been to another one no good, and I’m sick of trying to find them or whatever. It’s really important that you find the person with the right fit, because what they do is they create a really safe space for you to do those hard yards, you know, to have that hard conversation that is going to be challenging and draining and whatever, but that’s the point of therapy. It’s to help you go to those places yet that you otherwise might not have gone to because it was going to be really hard.

Jenna Muscat 1:10:58
Really helps facilitate, you know, just becoming aware of everything that you’ve dealt with and how you’re feeling about it, because I think so many times, even if we don’t mean to suppress how we’re feeling, I know, at least for me, I’m very avoidant, and I try to bury everything, to just not feel it and not deal with it. But you know, as I’ve painfully learned it, it’ll always come out.

Bill Gasiamis 1:11:21
Yeah, I love, also, what you said about educating yourself and learning, you know, the book the body keeps score, and therefore, like knowing that what you’re experiencing, that that physical reaction, or that anxiety reaction, and you’re able to then to observe yourself, and you can go, Well, I know what this is. It’s not pleasant. It’s yeah, not unfamiliar, but I know what’s happening, and it kind of, it kind of takes the edge off. It does it mentally?

Jenna Muscat 1:11:54
It does. You know, my anxiety manifested very physically, ironically enough, in semi stroke symptom form, I would feel dizziness, I would feel numbness in my body. So I got stuck in this loop of my anxiety is caused from the stroke, yet my anxiety manifests physically into these almost stroke like symptoms. But then that’s what they told me when I went to the hospital when I was having a stroke, is that it was anxiety.

Jenna Muscat 1:12:20
So you get caught in this loop, but I think just me absorbing that knowledge. I mean, I read book after book after book, just learning, and the more I learned, the more faith I had in my own body and my own, you know, nervous system and understanding, like the fight or flight response and panic attacks and what that looks like.

Jenna Muscat 1:12:41
Because I think people throw around the word panic attack all the time, but then you’re on the floor, hyperventilating, and your body’s numb and you can’t move, and you’re like, This clearly cannot be just a panic attack, right? Like this is a medical emergency. So knowledge is power in all ways, shapes and forms. And that was one of the biggest things that helped my anxiety was just learning about it.

Bill Gasiamis 1:13:05
Yeah, thank you so much for sharing and joining me on the podcast. I really appreciate it. I think your approach, your philosophical approach to this, is to be commended. And it’s really cool that you can come on here and be so open about all the stuff that you’re experiencing. Because I think even some other stroke survivors like there may still be feeling like, you know, some of the stuff that they’re going through is taboo, too taboo in their community to talk about.

Bill Gasiamis 1:13:38
So they can listen here and feel normal and feel okay, that you know that it’s part of their recovery and that they need to maybe do some work about it. So I love the work that you’re doing on socials and Tiktok. I encourage everyone to go across and go to recoveryafterstroke.com/episodes, to find all the social media links. Thanks so much Jenna.

Jenna Muscat 1:14:04
Yeah, thank you for having me. I’m looking forward to reading your book.

Bill Gasiamis 1:14:08
Well, that’s another episode done. I do hope you enjoyed the discussion. Remember to subscribe to my Patreon page. Visit patreon.comrecoveryafterstroke. You will also find the link in the YouTube description and in the show notes of this episode at recoveryafterstroke.com/episodes.

Bill Gasiamis 1:14:28
If you want to know more about my amazing guests, also visit recoveryafterstroke.com/episodes to find out their social media links and to download a full interview transcript. A huge thank you to everyone who has already left a review. It does mean the world to me, your feedback is crucial for the podcast success, helping others discover this valuable content, and making their stroke recovery journey a bit easier.

Bill Gasiamis 1:14:56
If you haven’t left the review yet, please consider giving a five-star rating. And sharing what the show means to you on iTunes and Spotify. For those watching on YouTube, remember to leave a comment below, like the episode and subscribe to the show on the preferred platform to get notifications of future episodes.

Bill Gasiamis 1:15:16
If you are a stroke survivor with a story to share, come and join me on the show. The interviews are unscripted and require no preparation. Just be yourself and share your experience to help others in similar situations. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Simply visit recoveryafterstroke.com/contact, fill out the form with the category that you belong to, and I will get back to you with details on how we can connect via zoom. Thank you once again for being here and listening. Your support means everything to me. See you on the next episode.

Intro 1:15:57
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed.

Intro 1:16:14
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Intro 1:16:37
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Intro 1:17:05
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Intro 1:17:29
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