E164: POTS after the COVID vaccine with Rachel Hellman, NP

Episode 164 September 26, 2023 00:49:49
E164: POTS after the COVID vaccine with Rachel Hellman, NP
The POTScast
E164: POTS after the COVID vaccine with Rachel Hellman, NP

Sep 26 2023 | 00:49:49


Hosted By

Cathy Pederson Jill Brook

Show Notes

Vaccine injury can occur after COVID injections, likely triggered by the COVID spike protein. Many people develop POTS or have worsening symptoms. Unfortunately, this can transform a healthy individual into a significant chronic illness that may impact mental health.

Websites discussed in this episode: https://www.awarenessforpotsies.org and https://www.hrsa.gov/cicp

You can read the transcript for this episode here: https://tinyurl.com/potscast164

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Episode Transcript

Mental Health and Healing after Vaccine Injury with Rachel Hellman, NP [00:00:00] Jill Brook: Hello, fellow POTS patients and terrific people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we're gonna speak with a nurse practitioner in training who has a lot of other credentials. She's also a colleague of Dr. Reddy who was on our podcast before, and we are going to hear about her experience with the COVID vaccine and how she is now working to help others in this same difficult situation. Rachel Hellman, thank you for speaking with us today. [00:00:31] Rachel Hellman, NP: Thank you for having me here, Jill. I'm honored. [00:00:34] Jill Brook: So before we get into your experiences these past couple of years, can you just tell us more about you personally and your healthcare career up to this point? [00:00:45] Rachel Hellman, NP: Absolutely. So in terms of my healthcare career, historically I worked in EMS, various pediatric and adult emergency departments, and the pediatric intensive care unit as a nurse at the Children's Hospital, Philadelphia. I was finishing my training as an acute and primary care pediatric nurse practitioner prior to my vaccine reaction leading to a needed medical leap of absence. I became a chronic illness and passionate mental health advocate, deciding to pursue a career supporting the chronic illness community, which I absolutely love with their mental health. And right now I'm in a psychiatric and mental health doctoral NP program at GW (George Washington). With the scholarly project that I hope will help transform care for the chronic illness community. So I'm very excited about that. I know I'm only one person, but all of us working together, I really think we can make a big difference. [00:01:42] Jill Brook: Wonderful. So for those of us who are not like as familiar with all of the healthcare positions and stuff, so basically you were a nurse, you had kind of a career with a nurse in several settings, and now you're pursuing your nurse practitioner's doctorate. Is that right? [00:01:59] Rachel Hellman, NP: Yeah. Yeah. Well, yeah, we'll say that. [00:02:01] Jill Brook: Okay, so what was your life like before COVID? Can you just give us a brief snapshot? [00:02:09] Rachel Hellman, NP: Sure. Yeah. Back in 2019, I did unfortunately experience a medication error when I was a patient receiving an infusion. And that did lead to A number of health challenges that we now know were POTS and mast cell activation syndrome. But at the time we did not realize that was what was going on. And before that, I considered myself healthy when I was working and being able to work in the emergency department and ICU on your feet for extended periods of time. You know, looking back, I am incredibly grateful that I had those experiences and I wish I had fully recognized how valuable my health was at the time. And so right before COVID I was already navigating some health challenges and I was actually hospitalized a month prior, so that in February, and they still at that point were saying that I had anxiety. So we entered the pandemic, knowing that whatever was going on was serious enough that we needed to take a number of precautions. So that was what was going on right before the pandemic really took off, so to speak. And so we recognized that I was going to have to be exceedingly careful. And so that was, I guess, what we were navigating right before the pandemic. And we got married in December, 2019, so right before [00:03:51] Jill Brook: wow. Okay. Well, I feel like we're kind of like backing up here, taking little steps. Can I ask, what was your life like before you got married, before you got POTS and MCAS? [00:04:01] Rachel Hellman, NP: Yeah, I was traveling. I was healthy. I was helping patients. I was actually working multiple jobs. I don't know how. Looking back, I look at how much energy I had and I think, oh, if I only had like 2% of that, what would I be able to accomplish? But you know, I was also in school and I was working with patients and environments that I absolutely loved. I miss the intensive care unit. I miss the emergency department and I, you know, was able to drive long distances and exercise without severe fatigue. And it's so many things that now looking back, you know, hiking, thinking about like, I would love to hike. I would just go on these long hikes and these are things that I, I look back on, oh my gosh, how nice it was to just be able to stand for even 30 minutes, 45 minutes and not have to think about the potential for pres syncope or other debilitating symptoms. So my life has changed pretty drastically. [00:05:17] Jill Brook: Yeah. So when the COVID vaccine became available, it sounds like you knew you had something, you didn't necessarily know that it was POTS and mast cell activation syndrome yet. But I guess my question is how did you feel about the COVID vaccine when it became available? [00:05:34] Rachel Hellman, NP: Honestly, I was cautiously optimistic. My biggest fear was specific to the potential for anaphylaxis. And looking back, I think to myself, oh, if only I had known. I had experienced anaphylaxis about one and a half years prior, which was what? Contributed towards what we now know as POTS and MCAS. So I was most concerned about that, but I had never experienced an adverse vaccine reaction before. So I thought my risk was low. Despite some understandable hesitation, I was also hopeful I could get vaccinated safely so that I could have protection from the virus. What I thought would be increased freedom and comfort in around friends and family. An increased comfort protection when working with patients. I will say that I was also excited because we viewed it as the ticket to family planning. This is something we purposefully delayed after discussions with an ob gyn team about a year prior, in the summer of 2020, because we wanted to ensure I was fully vaccinated prior to any pregnancy attempts, both to protect myself and a fetus. And at the time we viewed it as our golden ticket. [00:06:35] Jill Brook: So then what was your experience getting the vaccine? [00:06:39] Rachel Hellman, NP: Oh boy. So my experience getting the vaccine was initially very positive, and then it became very frightening. I would describe it as an experience that involved cautious optimism. And Then a significant amount of relief when I did not experience an acute reaction, then followed by an immense amount of gratitude. I remember when we got to our car after I received my first dose, I started crying and hugged my husband because I was so happy and grateful to have been able to receive a dose of the vaccine. Hoping it would offer me level of protection from the virus that would reduce associated morbidity and mortality if I was infected. In addition to really opening up our world, hoping that we would be able to see more family, friends, have more get togethers. Family planning, as I already mentioned, you know, there are so many things that I was looking forward to, so I would say that my initial 24 hour experience was very positive. So many, especially those who were on the front lines passed, and I know that they would've done anything to have the opportunity to get vaccinated. So it honestly felt like a gift. Unfortunately, though, this positive experience and feeling changed rather quickly and to an experience that I would describe as traumatic, life altering and completely unpredictable. [00:07:54] Jill Brook: Oh man. I feel like I've already experienced so many emotions in the last minute and now I'm bracing myself for the next one. [00:08:02] Rachel Hellman, NP: Oh boy. [00:08:03] Jill Brook: so, ok. I'll just take a breath here. Okay, so the first 24 hours passes and then what? [00:08:11] Rachel Hellman, NP: I slowly started to deteriorate. That's the best word I can use to describe what happened. Signs were there within 48 hours, but I tried to ignore them. These included shortness of breath with minimal exertion. Intermittent chest pain pre-syncope, heat intolerance, and tachycardia. And the tachycardia I was experiencing was up in like the 140s, 150s , but again, this was something that I had experienced before and quote unquote, I been told it was anxiety. So I knew it was not that, and I knew that at that point that I had some form of dysautonomia. So I thought that maybe it was some dysautonomia flare, let's put it that way. But gradually as my symptoms worsened, ignoring them was no longer an option. I collapsed five days after my vaccine, unable to sit up or walk. I developed left-sided weakness. I was seeing providers. No one knew what to say or do. As my symptoms worsened, it was recommended that I be evaluated for Guillain-Barre syndrome, so I did see a few neurologists. The left side of weakness was quite apparent. It's something that I still have to this day, and it's worse than I'm experiencing a flare up. I will say that during my last neurological exam, it was also found that one of my reflexes, my left Achilles reflex is deemed quote unquote trace. That's aka almost non-existent. I remember developing a list of symptoms that I experienced for my providers. We have a whole spreadsheet long document with, you know, my journey. Just make it a little easier for them and it seemed to really change day by day between tachycardia, gastroparesis, chest pain, brain fog, severe light sensitivity, vision changes. I remember one morning I woke up and I couldn't see out of my left eye for about an hour. Severe fatigue, post exertional malaise and I would refer to it as a crash after you know, minimal exertion. Choking when eating, joint pain. Hives. You name it, I had it. It, it really felt that way and unfortunately my symptoms were so severe, I became unable to drive. And this is something I still struggle with over two years later, but when my symptoms are better I can manage to drive about 30 to 40 minutes. But as I'm sure you can imagine, I did have to take a medical leave of absence for my program and pause my clinical training. I was able to finish that semester despite all of this. I don't know how, I dunno how that happened, but after that, you know, it just wasn't possible. [00:10:57] Jill Brook: Wow. So what is the timeline like during this? How fast did all of this stuff come on and how long did you live with it? At what point did you get in to see some doctors? Can you talk about the, the timing? [00:11:10] Rachel Hellman, NP: Yeah. Yeah. So neurology, first neurology appointment was within about a week and a half. They were able to get me in because of what they believed could be going on. There was some concern. PCP appointments were immediate. I was able to see my PCP virtually from home, which, which we were grateful for. Other specialists, took some time. My cardiologist at the time, unfortunately it was not a good fit. And we realized that we needed to see someone else. So the next cardiologist that I saw took about two months, and they were able to do an echo and other, you know, cardiac testing. At that point we realized that I needed to see a provider familiar with dysautonomia. Thankfully, it only took about another month to two months. In our community, that's probably not going to seem like much time. But there at that point then I started physical therapy. So I was able to start physical therapy a few months after the vaccine reaction. And then to have my tilt table test done, I actually saw another provider who was going to do a lot of autonomic testing. This was in october. So I had my, I got my vaccine in April and my tilt table test and autonomic testing started in October, and then after that it took, let's see, oh gosh, that was in 2021. I was formally diagnosed with mast cell activation syndrome in september of 2022 and I was formally diagnosed with POTS in October of 2021. [00:13:00] Jill Brook: Okay, so does that mean you had like, Six months of total hell. [00:13:06] Rachel Hellman, NP: Oh, it was, it was hell. Yeah. It was most days I was lying on the couch. When I started physical therapy, I started lying down. I will say that by September I was doing better, but then I would crash and my physical therapist had said that my crashes, like when I crash, I'm bed bound and we're talking, you know, right after my vaccine reaction, my husband was carrying me to the bathroom. Like when I say I wasn't able to walk, like I was not able to walk. And it just varied. And now we know it's related to inflammation and we know a lot more about what's been going on, but had to be very mindful of how much energy I used because if I did too much, it could leave me in bed. [00:14:00] Jill Brook: Wow. Your husband got a very quick introduction to In Sickness and in Health after your [00:14:06] Rachel Hellman, NP: Oh yeah. Oh yeah. He likes to exercise. I was gonna try to make a joke, but like he, he really got into like weight training cause he was literally carrying me to the bathroom. And so, you know, sometimes we have to make light of situations because laugh or cry. Right. But yeah. for him too in the beginning. He didn't realize how serious it was. Because a lot of what I was experiencing was not visible, and it wasn't until I developed pretty severe blood pooling and Raynauds that my symptoms became more visible. I mean, he could see on our pulse ox that my heart rate would be, you know, 1 60, 1 70, but I think sometimes it can be a little difficult until family starts to see those visible signs. [00:14:56] Jill Brook: Yeah, so let's talk about that. I guess I'm wondering what kind of a response did you get from your doctors, from your family, from your friends, from your colleagues? What was that like? [00:15:07] Rachel Hellman, NP: So the response I have from providers varied. But overall there was certainly confusion, level of compassion, but there was also this, yes, we understand you experienced this, but you still need to get the second dose. And what was most frustrating about this was that if anyone wanted to desperately be able to get another dose of the vaccine safely, it was me. And I have continued to experience an immense amount of grief around this. Because of how much loss you've experienced, the extreme COVID precautions we still have to take and understanding that I have less protection. Though to be honest, we would still be taking these precautions even if I was fully vaccinated you know, with considering long COVID and risk with exposures. But I knew that it was absolutely, without a doubt, extremely unsafe option for me. The first provider to tell me no, do not get another dose of the vaccine, was the first POTS specific provider who was familiar with Dysautonomia. And then the second provider to tell me the same was the second provider I saw that I mentioned who like did a lot of the autonomic testing and who was very familiar with dysautonomia. And these providers also told me they were seeing other patients with these reactions. And that was back in 2021. I will say that I was also working with an infectious disease provider who did still think I could get a second dose, and we worked closely with him to see if a smaller dose or even a dose while admitted as a patient for observation in a hospital was possible. We really looked, looked at so many different options, but we ultimately decided that it was too unsafe for me. [00:16:43] Jill Brook: And so, sometimes you hear about vaccine injury victims having a hard time getting taken seriously by doctors, or that sometimes they even will say to a doctor that they have long COVID from the infection instead of from the vaccine because they have just learned that they don't get treated as nicely. Did you encounter anything like that? [00:17:07] Rachel Hellman, NP: Yes, when I've had to go to the emergency department. Though I will say, the most recent er visit I had, there was no shock, no pushback, nothing. They looked at me and they apologized and they said, what vaccine did you get? When did you get it? [00:17:22] Jill Brook: And how recent was that? [00:17:24] Rachel Hellman, NP: This past weekend. [00:17:25] Jill Brook: Okay, so we're doing this in June of 2023. [00:17:29] Rachel Hellman, NP: Yeah. Yeah. But back in 2022 they've actually left it out of documentation and notes. They'll say, when did all of the start? And I'll say, well, I really started to get it. Pretty sick after my first dose of the vaccine, and usually a notice will say, patient started to develop symptoms two years ago, and we'll leave that out. I've noticed that. And it's almost like they're too fearful to even acknowledge it in documentation. [00:18:03] Jill Brook: Mm-hmm. So this is where it's interesting that you've been a nurse. When you're taking a history, do you leave stuff out like that if it's uncomfortable or what's going through your head, the provider side of your head when you see stuff like that? [00:18:18] Rachel Hellman, NP: To me it's dangerous. Because I, I think that there seems to be a level of. Almost like self preservation, like they're trying to protect themselves in some way. That's what it seems like. The onset of symptoms is a very important component to document. You know, if someone developed a traumatic brain injury after a car accident, I can't imagine leaving out, the fact that it was a car accident, I just, and that's what it seems like to me, but, that's the comparison and the example that comes to mind for me. Again, if a patient has a reaction to a medication that is documented, that is documented, that is, is unsafe to leave that out. And but when it comes to my reaction to the vaccine, you have to really dig into my chart to find it. If you find it. [00:19:24] Jill Brook: Yeah. Okay. So how did your family and friends and colleagues react? Did you tell them that you thought you had a vaccine reaction? Did they believe you? Were they supportive? [00:19:37] Rachel Hellman, NP: They did not react well. They reacted pretty badly, actually. The first few weeks I was hearing anxiety, anxiety, anxiety. The real bonus was when rumors were spread, that it was all in my head and others would not acknowledge it. And sadly, most of these individuals are providers. As recently as October, we had a family member say, no, it isn't possible. No one is reacting to the vaccines. And it hasn't really mattered. I mean, we've shared literature as you're familiar with. There's been more more literature available now, and that doesn't seem to have made a significant difference. So you know, this song, we don't talk about Bruno from Encanto, if it. We don't talk about Rachel and her vaccine reaction. We don't talk about it. You know, the common thread was that people were viewing me as less than. Oh, you had a reaction to something that no one else is reacting to. We were able to get it just fine. There must be something wrong with you. And we were very much on an island in the beginning. My husband and I, mostly on our own, trying to survive and figure out what to do. At that time my family believed us outside of two family members, one being my sister. She is so amazing. And now we do have a wonderful support system. Largely chosen family, individuals I've met during my chronic illness journey. Other incredible friends and a few more of my family members who've been supportive. But it's, it's been really challenging. [00:21:13] Jill Brook: That sounds heartbreaking, especially when you're in pain and you're scared and you're not able to work. So there must have been financial strain and just all these things. But I'm, I'm wondering now, like you said, there have been published studies reporting that POTS and other things myocarditis, some other things that are significantly more prevalent after the COVID vaccine. For example in our community, the Kwan at all study, the 2023 study from Cedar Sinai is well known for showing that POTS was more prevalent in the 90 days after vaccine than before vaccine. Also, there have been headlines showing that some social media was taking down patients' reports of any vaccine problems because they did not want to promote vaccine hesitancy, and I know that that basically made me furious because I'm so familiar with people who have trouble being taken seriously, who feel all alone, who they're told it's all in their head. And now you're not gonna let these people find one another and support one another online, and you're gonna make everybody's family think are the only ones having this situation. I start to shake just talking about this. I cannot imagine what it's like for you, but I guess my question is, now that this has come out, have people come back and apologized to you? Has there been sort of a, an Oh wow, we're so sorry you went through this without our support, I can't believe we weren't there for you. [00:23:00] Rachel Hellman, NP: No, no. What they have done and continued to do in a lot of ways has been incredibly hurtful and more than an apology, I'm looking for people to be informed about what happened, what could happen, the risks that exist. If I could choose one or the other, I would, I would choose that, you know, take more time to learn about these conditions that, that I've survived. So many others have developed so they can recognize these in their patients, work on their discomfort with disability, increase their ability to provide compassion, reduce judgment, bias, and projection, and. Ideally, if something happens to someone else in their lives or a patient they're seeing that they don't understand, they're not familiar with how they're presenting or what they're sharing, I want them to still be able to provide compassion, support, empathy, believing someone's experience without necessarily needing to understand. I really strongly believe that you can believe someone's experience. That's a choice. That's a choice that all of us can make. Whether or not we want to believe what someone is going through, what they share with us, and I hope that moving forward they'll choose to believe even if they don't understand or like what someone's telling them, because perhaps it makes them uncomfortable. [00:24:26] Jill Brook: Yeah, for sure. And it does seem like in other instances of this... culture is trying to have a whole lot of empathy for people's experiences. But then in this one particular area, it seems like it's hard. Why do you think people have such a hard time acknowledging that you had a vaccine reaction? [00:24:51] Rachel Hellman, NP: I think it makes them very uncomfortable. So to do that, they would have to acknowledge their initial assessment was not accurate or correct. Look at all of the hurtful comments they have made, their biases. Ways they've judged patients they've seen, perhaps even things they've missed. And that is a really hard pill to swallow. Many healthcare providers I've interacted with, the idea of vaccine injury, you know, in the medical community isn't really an acceptable topic or conversation item. It's very much avoidant when possible when brought up. There's often a, but it's rare. That's usually what I hear. It's much easier to think that something is always safe or almost always safe or even never safe. And I also think that there's a lot of fear. So I would say that I think fear has driven a great deal of the decision making and still drives a lot of the decision making around how we talk about vaccine reactions. Understandably, we're very fearful that talking about these reactions will increase vaccine hesitancy, which we worry will lead to more individuals deciding not to get vaccinated, and then lead to the spread of a number of infectious diseases that we have successfully been able to largely combat thanks to vaccine technology. So the idea that a vaccine could cause or contribute towards an injury either directly or indirectly is scary. It leaves people feeling vulnerable. Not to mention, there's a lack of awareness and understanding specific to the illnesses that are being seen in a number of individuals with these adverse reactions, which I believe poses even more challenges. And it's important to note that some vaccine injuries aren't as apparent even once diagnosed. Many of the illnesses we're seeing, again, as I already said, or not as well understood by many in the medical community and I know I've said a lot. I guess if I had to put it succinctly, it's that most just are not aware of many of these injuries beyond short-term side effects, and that's harmful in a number of ways. And sometimes these reactions from what we're seeing, hearing can be delayed for some. [00:27:03] Jill Brook: So a great thing about you is that you have taken steps to help others in this same situation, and I wanna make sure we have enough time to talk about the cool work that you're doing. Maybe just quickly, I'll ask you a couple more questions about your experience, but then we'll move on to what you're doing about it. Did your experience change your feelings about our healthcare system or anything the way that you had things not put in your chart or told that this was all in your head or just anxiety? Has it changed what you think of the I guess community of healthcare providers that you're in. [00:27:43] Rachel Hellman, NP: There's a lot that needs to be done. I like to believe that everyone going into this field you know, the goal is to help as many individuals as possible. People who go into healthcare, all wanna help people, right? We wanna help people and I do think that there's a lot that needs to happen again, I, I think there are a lot of changes that can be made. There are a lot of opportunities for growth. Opportunities for us to reflect on how we're practicing. I think there are always areas for us to improve on. I do think when it comes to vaccine injuries specifically, I would love to see us make more room for the acceptance, analysis and really gathering of all the data around vaccine injuries, even if there's data that makes us uncomfortable, you know, we may not like the data, but that does not make the data go away. And I think the best way for us to increase vaccine safety within healthcare settings is for us to be willing to acknowledge these successes and areas for improvement in areas that are of concern and an approach that views safety in healthcare is a never ending process where we're always trying to enhance the safety and effectiveness of the care that we're delivering, including the safety and effectiveness of vaccine technology. So, I know this is a stretch, but I would love for us to look at car manufacturers and their dedication to enhancing the safety of vehicles, annually as a goal, even when looking at vaccines. So car manufacturers understand that no car will ever be 100% safe. Just like no medication, no vaccine will ever be 100% safe. If we get there, then that would be wonderful. But I don't know that we will anytime soon. I wish that we would. So, so we know that that's why we take steps to enhance safety, but that doesn't mean that we can't continue to make attempts to learn from adverse vaccine events and accidents. I'm referring to car accidents, so of course this is not a perfect example. There are many differences, but what I'm trying to pull from this is that we really need to be dedicated to consistently collecting and analyzing data around vaccine safety, medication safety, patient safety, adverse reactions, and even situations that make us uncomfortable. And in fact, I can guarantee that there will be just some discomfort. But it'll provide us with the information we need to make changes that can help more in the future. And I don't think it should be good enough for us to chalk anything up to being rare, and then look the other way. You know, imagine if car manufacturers did that. Well, the windshield flies off, but it's only happened in 50 vehicles. It's rare, so don't worry about it. They're not doing that, and there's a reason why they're not doing that. And I believe we can always be doing more to increase safety. These are human lives. Concisely, yes. I think there's a lot that we still need to be doing and if anything, I am more excited to be in this field because having this awareness and having this insight, I think will allow me to really make an even larger difference and I hope change happens quickly. [00:31:03] Jill Brook: Have you found others who had similar reactions to the vaccine and what are those people reporting? Have you kind of found a community? [00:31:13] Rachel Hellman, NP: Community. Yes. Unfortunately also, yes I have encountered a number of people who've had very similar experiences that do range in severity. So some are still able to work with the addition of a medication such as a beta blocker if they've developed POTS and they're struggling with tachycardia and have a milder form of POTS. Others their symptoms have been so severe they're unable to work so, Noticing that they're developing similar conditions and symptoms in individuals with long COVID. So we're seeing mast cell activation syndrome forms of dysautonomia such as POTS, orthostatic hypotension, small fiber neuropathy, myalgic encephalomyelitis. You also notice chronic fatigue syndrome and perhaps are now being diagnosed with Ehlers-Danlos syndrome. So some have these conditions, like myself, and then they worsened significantly. And then others have reported, you know, being healthy prior to their reaction and developing these conditions. [00:32:16] Jill Brook: So we've talked offline a little bit and I know that you've mentioned that suicide is a problem within this community. Do you wanna talk about that? [00:32:26] Rachel Hellman, NP: Yes, it absolutely is a serious concern and significant problem in this community. You know, it's already a significant problem in our country and honestly around the world, and we've been seeing this increase, especially in adolescents since 2012. Largely found to be related to social media use. But comes a pandemic and the collective loss and trauma isolation all exacerbated this. So that's for individuals without these conditions, but it's a significant concern for individuals navigating these illnesses such as POTS, other forms of dysautonomia, MCAS, ME/CFS, EDS, and many others. There is a profound and life altering amount of loss that individuals experience. Loss of autonomy, loss of career in some situations, loss of friendships, relationships with family members, other potential relationships, even relationships with coworkers. So there's significant grief. Add on dismissal by loved ones, medical providers, medical gaslighting, diagnostic delays, medical trauma. Then add on the isolation, which has been significantly worsened by COVID 19 and many in our community, continuing to need to take precautions, while so many around them have tried to, you know, quote unquote move on. Or perhaps our quote unquote, over COVID which is something we hear. So add in all of these, the grief, loss, trauma, isolation, dismissal, gaslighting and debilitating symptoms. There are serious quality of life concerns, and we are seeing a higher risk for suicide in this community as some of your research has demonstrated. And I'm extremely concerned, you know, how can we reduce suicide and suicidal ideation? How can we increase this needed awareness? And how can we help individuals during a journey that can be incredibly isolating and painful? So, you know, these are beautiful souls, beautiful humans, deserving of love, visibility, support. And this is what my work both now and once I graduate will revolve around. So I am dedicated to this community. Reducing suicide and suicide risk, and I will continue to be for as long as I'm here. [00:34:41] Jill Brook: Oh, that's so wonderful. And I know that your schooling is now focusing on some of that, but you are also the founder and president of a nonprofit working to help people in this community. Can you talk about that? [00:34:56] Rachel Hellman, NP: Yes, yes, it's a true labor of love. I could not care more about everyone in our community. Although we're a 5 0 1 C three nonprofit, I also have tried to make it feel like a second family for individuals who really need that love and support. The organization is called Awareness for POTSies also known as a four p. And our mission is to increase support, hope, visibility, and awareness for those living with these conditions. I really wanted to create something that would reduce suffering, increase support, and increase quality of life. So we have a care package program, personalized letters program, and have many large visions for the future. Our plan is to eventually provide medical appointments, stipends, and even scholarships. I have to say it could not have been possible without the support of my incredible co-founder and husband Adam, and everyone on our board who I really love dearly. Again, some of the most beautiful souls I feel blessed to have in my life. You know, we have also volunteer program and I, I just can't wait to see how many more we're able to help and it's never gonna feel like we're doing enough. It's gonna be a journey, a long wonderful journey, hopefully. [00:36:08] Jill Brook: Oh, wonderful. Besides your organization, do you know, are there other resources that you can recommend for people who are injured by the COVID vaccine? Like isn't there a government compensation program that's supposed to help or, or what else might be out there for people in need? [00:36:26] Rachel Hellman, NP: Yeah, so when it comes to organizations, and I would recommend your organization, that's why I'm here. But I would recommend POTS UK, dysautonomia support Network, mast Cell Disease Society, and many others like Dysautonomia International. There is a countermeasures vaccine injury program for individuals who were injured by the COVID vaccine. The process involves submitting a completed request for a benefits package, and then it's reviewed, and then if they're deemed eligible, more documentation is required. And then, Potentially a payment is issued. If an individual's declined, they can ask for them to reconsider their submission. And I can even provide you with this link to share when posting this to make it easier for listeners to access. It is important to note that the submission needs to be made within one year of the reaction. [00:37:21] Jill Brook: Okay. Okay. Yes, we would love that link and we'll provide it in the show notes. Definitely. So do you feel like there's hope for people who have been injured the way you have? Are there treatments that seem to be helping people? What can you say about hope for getting better? [00:37:40] Rachel Hellman, NP: Yes. Yes. I think there is hope. You know, Dr. Sujana Reddy, your listeners are hopefully very familiar with her, has another study she's gonna be publishing by the end of 2023. We've seen more articles which just suggests to me that there's more traction and gradual awareness. And I think we can actually look at the research that's being done to help those in the long COVID community as well. Because in many ways I view us all as being under one long COVID umbrella. It's not surprising to me why the illnesses I've developed and others with vaccine injuries have developed are so similar to those seen in many with long COVID. And it's not surprising because I believe the underlying trigger is similar. The spike protein. There was a study released in January of 2023 demonstrating that free spike proteins in the blood appeared to play a role in the development of myocarditis seen after mRNA vaccine administration and free spike proteins in the blood. We also know are present individuals with long COVID. So we know that the spike protein is able to attach to ACE two receptors and cause chaos throughout the body. Of course, I don't wanna simplify it because there's a lot there, but it would not surprise me if the common denominator between the two is the spike protein. And my friends who are providers have said that I fit under the long COVID umbrella because my illnesses and experiences are so similar to theirs. So for them, they developed post-infection. Unfortunately, there is not as much research specific to vaccine injury, but there is a lot of research that's ongoing. I wish there was more, but there's a lot of research that's ongoing specific to long COVID. So some options that I think are important for individuals to consider talking to their medical teams about. I cannot emphasize enough that this is not medical advice would be to get evaluated for mast cell activation syndrome. Myalgic Encephalomyelitis or chronic fatigue syndrome and other potential co-occurring conditions. I stay in mast cell activation syndrome, especially because of the medication options. With a pretty good safety profile and there is more research ongoing that there's a large mast cell component for a number of individuals with long COVID and also with I believe with these vaccine injuries. I can say that for myself, I was told that my reaction is largely related to MCAS. So I think we can look at treatments helping individuals with these conditions like mast cell stabilizers, H one, H two, blockers, cromolyn, Singulair, vitamin D, vitamin C, low dose naltrexone, even considering a low histamine diet and working with a dietician. And also when it comes to POTS, looking at non-pharmacological options, potentially working with a physical therapist, maybe even occupational therapist, pharmacological options like beta blockers, midodrine, fludro cortisone, Colanor or even IV fluids. And then you know, we know that there is a large inflammatory component for some, there's ongoing research that's really suggesting that and confirming that for providers who been suspecting that for quite some time. So, looking into options like Jill, I know there was a paper that you published around a gluten-free diet. Options for individuals with POTS and you know, even reducing stress, I would say because we know that stress, hopefully no one's gonna get mad at me then if listeners will get mad at me for saying that. But I say that because we know that stress contributes towards inflammation. And I think that's also critical. So I, I say these things because there are a lot of potential options, even assessing for vitamin deficiencies. They just discovered that I have severe vitamin deficiencies that we were not aware of. B vitamin deficiencies, so, I am saying all of this because I do think there are reasons to remain hopeful. These are options that are available now, but I think that with ongoing research and the, you know, availability of more information, I think that we're going to have more and more options for individuals with these conditions. [00:42:01] Jill Brook: That's great. That is so hopeful, and I'm excited that you are dedicating your career to going deeper on some of these things. I should give a quick shout out. We have a monthly Mast Cell Matters episode of this podcast where we do really deep dives on mast cell activation syndrome with some of the really, really top experts. And we're so lucky that, that they have agreed to come and they realize the urgency to get this information out. Because mast cell activation syndrome does seem to be such a big player for a lot of people. But we're so thrilled that you have seemingly made it through your experience and lived to tell the tale and are now working to help so many others, and it's really just beautiful that you're using your challenges to, to mean something to make the world a better place. So thank you so much for all you do. And where can people find your organization online? [00:43:06] Rachel Hellman, NP: So two websites options, they can use either pots.Support or awarenessforPOTSies.Org. And then those websites on the top right, you'll see options for our Instagram page and our Facebook page as well. Our Instagram page seems to be where there's more interaction between individuals in the community. So that we offer more support. So, and the websites allow individuals to apply for like, care packages and other options too. [00:43:44] Jill Brook: Oh fun. That's so nice. And I know that your partner in this is Dr. Sujana Reddy, who was on our podcast on an earlier episode, and that's one of our all time most popular episodes. So we are grateful to her for her work as well. And thanks to you too for, for all you're doing to look out for everybody. We're excited to hear how it goes and hope you it'll come back at some point and give us an update. [00:44:09] Rachel Hellman, NP: Yes. Yes, absolutely. [00:44:12] Jill Brook: Okay. So of course we stopped recording for a minute and you started making a point that really resonated with me. And it started with all you have to do is listen to some of these patients. Do you mind saying what that was? [00:44:28] Rachel Hellman: Yeah, yeah, we'll see with my brain if I can. No, it's an area that I'm very passionate about. So yeah, all you have to do is talk to someone in our community, in the chronic illness community. Talk to one person and you will hear so much kindness, love. I mean, it's just. It's just unbelievable with individuals in the chronic illness community navigating these conditions, what they've had to go through, how they've been treated, not by one person in one area of their life. It's often multiple different areas, core areas. Like, I view them like family is to me a core area. Friendships, that's another core area. They continue to be hurt and the kindness that they still have that they still maintain is just remarkable to me. Even my close friends I mean, I, I listened to what they've had to navigate even this week, what they're having to navigate in appointments, what they're having to navigate in the hospital. Time and time and time again. And one would think that when you've been hit that hard repeatedly. Then maybe the kindness would not be there anymore. And that's not what I see. What I see is that, if anything, individuals in these communities are trying to lift one another up. And that, to me, is, like, just incredible. And I really, truly wish that more providers and just individuals in general could see What I'm seeing and what I'm sure you're seeing and what so many are seeing. So I didn't fully cry, so that's a win. [00:46:25] Jill Brook: Well, I see that too. I see that too. And so is there anything you would like to say to fellow patients in a similar situation to you? [00:46:36] Rachel Hellman: Oh goodness. Yes. Your story matters. Your visibility matters. And you matter, and I am heartbroken for everyone listening who has experienced an adverse reaction to one of the COVID vaccines. Add on individuals being met with silence, disbelief, dismissal, and other experiences that have been traumatic. You know, it's just devastating. And I'm making as much space for everyone who has been impacted in this way as I possibly can. I hope visibility increases. Please know that you are not alone. In the darkest moments, please know that people do see you. You have a beautiful purpose here on this planet. You touch the lives of those around you and this world really needs you here. I hope answers come that more research sheds light on what you've experienced and provides avenues for symptom improvement and you are all deserving of visibility. Kindness, compassion, love, and support. Please know that, and we will not stop fighting for all of you. [00:47:43] Jill Brook: Oh, that's beautiful. Amen. Thank you. Any final words for us today? [00:47:50] Rachel Hellman: Holding onto that hope is so critical. It really is. And I hope that I'm able to leave some people today, that we're able to leave some people today with some hope that they can hold on to. I have to hold on to that, but not just holding on to hope, like understanding and hopefully they're hearing that there are many people out here who see them, who are going to fight for them, and that's not going to change. We're not going anywhere. [00:48:20] Jill Brook: Oh, that's beautiful. Awesome. Thank you so much. We'll end it there. Okay, perfect. Well, thank you so much and Okay listeners, that's all for today, but we'll be back again next week. Until then, thank you for listening. Remember, you're not alone and please join us again soon.

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