E113: Academic POTS in Australia and Life as a POTS Mom with Celine Gallagher, PhD

Episode 113 January 31, 2023 00:39:56
E113:  Academic POTS in Australia and Life as a POTS Mom with Celine Gallagher, PhD
The POTScast
E113: Academic POTS in Australia and Life as a POTS Mom with Celine Gallagher, PhD

Jan 31 2023 | 00:39:56

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Hosted By

Cathy Pederson Jill Brook

Show Notes

While Dr. Gallagher was professionally involved in POTS research, her daughter was diagnosed with POTS. Her background couldn't prepare her for the reality of living with POTS and frustration of not having the answers.

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Episode Transcript

Complete Episode Jill Brook: Hello fellow POTS patients and wonderful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of POTS Practitioners with someone who has multiple perspectives on POTS and who is doing all kinds of important work to help POTS patients. Dr. Celine Gallagher is an academic with a special interest in dysautonomia, POTS and cardiovascular disease. She has worked in both the UK and Australia as a cardiology specialist working with things like chest pain, angina angioplasty, and cardiac rehabilitation. Since 2013, she has been a researcher focusing on improving outcomes in chronic conditions with a special focus on atrial fibrillation and more recently on autonomic dysfunction. She completed her PhD in 2019 and she is increasingly focusing her research on how to help patients with dysautonomia and POTS following her own family's personal experience with POTS, unfortunately. Dr. Gallagher, thank you so much for joining us today. Celine Gallagher: Thanks so much for having me, Jill. It's really great to be here. Jill Brook: And I just have to emphasize that you are both a nurse and a doctor, but you've invited me to call you Celine. I don't want people to forget how qualified you are. Celine Gallagher: Thank you, Jill. But Celine is just fine. Jill Brook: You are not always a POTS researcher. You started focusing on heart rhythm research and atrial fibrillation. And actually when I looked up your prior articles, you had more publications on atrial fibrillation than I think there are total articles on POTS by anyone ever. And so I wanted to start by just asking what exactly is heart rhythm research and what is atrial fibrillation? Celine Gallagher: Absolutely. I've certainly spent most of my career in the cardiology space. Some of my early research did focus on disease of the arteries of the heart. So things like heart attack and angina. And then I moved into heart rhythm research. This is looking at problems relating to the way that electrical activity moves through the heart. Atrial fibrillation is the most common type of heart rhythm disorder. It's an abnormal heart rhythm coming from the two top chambers of the heart, which are known as the atria. It causes them to beat usually in a fast and irregular way. And this can cause a range of symptoms including palpitations, dizziness, shortness of breath, and chest pain. Not to unlike POTS really. A lot of my research in this space focused on helping patients learn how to manage this condition. Like POTS there is no cure for atrial fibrillation, and so a lot of it is about teaching people how to manage acute episodes and steps that they can take to reduce the likelihood of it becoming worse in the longer term. So, although my research focus has shifted in recent times and they do share some common aspects. Jill Brook: Yeah, a lot of that does sound pretty familiar. Now, I think that you became a POTS expert through necessity more than through academic interest. Is that correct? And if so, do you mind talking about that? Celine Gallagher: Absolutely. My family's personal experience with POTS came as a huge surprise at the time of my daughter's diagnosis. I had actually already been involved in some POTS research. So the head of our research group, Professor Dennis Lao had become interested and he had supervised one PhD student who had POTS as her primary focus. And I had peripherally been involved in some of this research. And then a couple of years ago Marie Claire Seeley joined our research group. Her PhD is also focusing on POTS, and she's coming towards the end of that and has really produced a fabulous body of work in the POTS space. And I've been fortunate enough to be her supervisor throughout her PhD, and all of this was happening prior to my daughter's diagnosis. So this happened in July of 2021, but all of this research and being involved in the POTS space did not prepare me at all for what POTS brought to our family. So it certainly was a huge surprise when my daughter started having funny turns and passing out and POTS was definitely not the first thing that came to my mind when all of this started happening. So I remember very clearly the first phone call I ever received from school, and this was in July of 2021, saying that my daughter had experienced a funny turn. She had been shaky and vague, but they had laid her down in the sick room. And she felt better after lying down. Jill Brook: Of course. Celine Gallagher: Yes. And then she'd gone back to school. But it happened on two further occasions within the space of a few days, and she ended up being taken by ambulance to hospital. And this in fact did happen on a number of occasions and every time we were told various things, she would need to eat more breakfast or drink more water, without really getting any answers about what was going on. But I do feel very fortunate because in the end we did receive a relatively quick diagnosis through my connections with Dennis and Marie Claire, who had set up a specialist POTS clinic. And so she went along to this clinic and we had the various tests done which confirmed the diagnosis. But we're still working towards getting it right. She still does feel rotten a lot of the time. She unfortunately still passes out on most days. And managing a 14 year old going through this, Incredible challenge at an already challenging time of life has really been life changing for us all. She's missed most of school this year. And the impact on her and our family is really hard to quantify. It's been so hard to understand how this teenager who 18 months ago was doing four hours of aerobics a week and then would run to a netball game can now at times be bed bound or sometimes has to be dragged along the floor to get to the toilet. So it really has been life altering. Jill Brook: Boy, that's such a coincidence. Can I just ask, did you have a moment where you were kind of feeling like, No way, there's no way that this is coming into my personal life after it's already so much in my professional life, like, what's going on? Somebody wants me to eat, drink, and breathe POTS. Celine Gallagher: I still feel that way, Jill. I still can't believe that this has happened. This, you know, really amazing coincidence to have been involved in POTS research and then to have this personal experience is still really something that just blows my mind. Something that I never would have thought would've happened. So I still have those moments. They still happen, even. Jill Brook: So here in the United States, we're always hearing about how wonderful Australia's healthcare system is compared to ours. Can I just ask what it's like for a POTS patient there? And maybe your situation was unique because you had connections with probably the best POTS experts in Australia already. But what is it like for an average POTS patient in Australia to get a diagnosis? Celine Gallagher: Look, I think the average POTS patient here in Australia does really struggle to get a diagnosis. I think a lot of that is really around poor POTS awareness amongst clinicians. It's still something that is not taught in undergraduate degrees. So in our medical nursing and allied health degrees, it's not something that is as standardly taught across those sorts of undergraduate degrees, and that of course leads to poor awareness amongst clinicians. So every day in the clinic we see people who have struggled for many years to get a diagnosis. But a lot of this is really related to that poor awareness. And we do in general, have a really great health system here in Australia. So we have a free public health system that everyone can access. I think this is quite different from the United States, although I haven't lived there. So it's difficult for me to say. But I do hear a lot in the US about insurance and having to pay to get into hospital and a lot of it being about having the right coverage to access services. So our public health system is free and accessible to all but we still face many of the same challenges in relation to diagnosis. And also ongoing support for the POTS community in accessing disability support or, services in the longer term as well. Jill Brook: Is seeing everything from the patient's side now what you expected when you were always on the practitioner side? Celine Gallagher: Absolutely not. It's totally different when you are experiencing the other side. I would consider myself relatively health literate. Being a healthcare professional still didn't in any way prepare me for the way we were really almost dismissed on a number of occasions when we presented to the emergency department. But again, I think this is just about poor POTS awareness amongst clinicians. But it was very different experiencing the other side. Jill Brook: I also wonder about the process that a lot of chronic illness patients talk about where when they first get their diagnosis, their expectation is, Oh, okay, now that we know what this is, we're gonna be able to treat it and I'm gonna be back to 100% pretty soon. And they gradually figure out, Oh wait. There are not necessarily answers. There's only treatments I can try, and the treatments don't always help. And sometimes they have side effects and sometimes it's worse than nothing. And you kind of have this gradual degradation of your expectations. And I'm just wondering how frustrating might that be when it's your own daughter and you're the expert? And do you ever feel like your daughter is saying, Hey mom, I thought this was supposed to be your area of expertise and your colleagues, this is the best they can do. Is there ever sort of a feeling like that? Celine Gallagher: Absolutely. I think we just don't have the answers that we need in the POTS space, and this is a result of it being chronically underfunded and under researched over many decades, which means that we just don't have the answers that we have for other conditions. Compared to my experience in the heart rhythm space when there's a question that we don't have an answer to, there's a lot of resources being put into answering that question and finding out what works so that we can inform clinicians and they know what steps can be taken to help most people feel better. But that's totally different to my personal and professional experience in the POTS space where really we don't have that degree of research to base our decisions on as clinicians. So we do end up trying lots of different things in different people and trying to find what works and what makes people feel better and helps to keep them functional. But we don't have the same level of evidence that we have in other areas to make those decisions. So certainly for my daughter, it's really frustrating and I think after 15 months, she's starting to understand that we don't have the answers, but we keep trying different things in the hope that it makes her feel better and can get her back to school, and can get her out socializing and as functional as she can be. I guess the other frustrating thing is that the condition itself waxes and wanes over time. So sometimes it gets better and sometimes it gets worse. And often you can change your mind about what the right thing to do is. You know, one day you might think we need more medication and the next day things might be a little bit better and you think, oh, maybe we need to pull back on that. So it does seem quite complex and quite difficult to manage both personally and, and in the clinic. It is a real challenge. But I do see it as a challenge and I think those challenges create lots of opportunities in the research space, and I certainly hope that I can transfer some of the skills that I acquired in my heart rhythm research years and bring that to the POTS space and hopefully, contribute to some meaningful outcomes and better ways that we can treat patients by informing clinicians. Jill Brook: Well, that's really exciting to me because like I said, I looked at some of your past papers over the years, and that's exactly what you've done for other heart rhythm disorders, and you have so many papers studying so many different lifestyle things and treatments, and it's like you and your team have really done an amazing job of looking for every little thing that might help patients in that scenario. And the idea of you bringing that same skill set to the POTS is just amazing. Is that what you're hoping to do going forward? Celine Gallagher: Absolutely. I think there are so many opportunities within the POTS space and I really hope that a lot of the research we undertake can meaningfully improve outcomes and help patients live better with the condition. I don't think we're going to find a cure for the condition, but I think if we can manage symptoms better, if we can improve functionality improve diagnosis, they all meaningfully contribute to improved outcomes in the population. And that's what I'm really hoping to bring to this space. And I'm really excited to be here. Jill Brook: We're so excited to have you and I'm so sorry for your situation and your daughter, but I have to say that I think sometimes our listeners who maybe do not have access to any great experts, or maybe they don't have very good care in their part of the world. They actually feel a little bit comforted to know that even the very top experts don't have some magic answer, then they're just holding out on everyone else, right? They're keeping it to themself. That this is genuinely really complex and nobody has all the answers yet. Celine Gallagher: Absolutely. I really wish I did have those answers, but it does seem incredibly complex and there are so many conditions that interplay together. It does seem quite tricky to work it all out. And certainly to manage it. And that's been both my personal and professional experience. Jill Brook: Well, yeah, I wanted to actually talk about that very thing because POTS seems to have so many different angles to it like you said, the different overlapping conditions, and there's the autonomic dysfunction and the sympathetic overdrive and the neuropathy and the GI problems and the hypovolemia, and so much more. And to me it feels like this gigantic tangled knot of issues and like where do you even start? Right? And so I'm just wondering, as a POTS researcher, how do you choose where to start looking at POTS? Celine Gallagher: Well, it certainly is a very gigantic tangled knot. I think you really nailed it there. Jill, there's so many different aspects to POTS and it's difficult to know where to start, but I do think this does create lots of opportunities. Everyone wants to know what's gonna make people feel better. So I think interventions that can help to manage people's symptoms and improve functionality are always of interest. It's also of interest to look at ways that the condition could be better diagnosed and understanding more about what it's like for people living with the condition so that we can design healthcare and support services around that. So there's a lot to be done. As with all research, it faces challenges. There are constraints with both time and funding. But I think working on a few key studies that can make meaningful outcomes and contribute to improved outcomes is a good place to start. Jill Brook: Yeah, so you co-authored a paper about the drug Desmopressin, I hope I'm pronouncing that correctly, in POTS, and I'm wondering if you can talk about that, because that's not a drug that comes up as one of the super common drugs in POTS. But I know that I got to try it once as part of a test that I was doing when I was getting my full workup. And I felt like it kind of helped, but my doctor was saying, No way, we're not gonna prescribe that long term. But I was wondering if you could just talk about that drug and how it might relate to POTS. Celine Gallagher: Absolutely. So we published a, a case study involving the use of Desmopressin. So this is a medication that works in the kidneys on antidiuretic hormone. So it works by reducing the amount of urine the kidneys get rid of. So we know kidney function often works abnormally in POTS and the system around the kidneys works abnormally and that lots of people have issues with what's known as polyuria or needing to pee very frequently. And we also know that getting rid of lots of fluid by peeing a lot is probably not helpful in the POTS population So it's a medication that helps to prevent that and it's already available for use in a certain type of diabetes and in children who have issues with bedwetting. And even in adults who get up more than twice a night to go to the toilet. But it does have some potential side effects and I think that does make a lot of people a little bit nervous about its use. In particular, sodium levels need to be pretty closely monitored. And like a lot of other medications that we use in the POTS space, it hasn't been properly evaluated in a clinical trial for long term use. And so there's been one study that has looked at the acute use of it, but we don't have any data to support that long term use. And that really leads to clinicians being unsure about whether it's safe and whether it's effective to use in the long term. So again, this is just something else that needs to be looked at. I think it would be of benefit to look at because like you, Jill, the individual involved in our case study felt a lot better with its use. So it's another one of those research areas that could be looked. Jill Brook: Right, put it on the list of things that needs more funding, more manpower. But yeah, as somebody who wakes up to pee, a lot of times every night that drug does interest me. . I tell myself that POTS gives me other reasons that I don't sleep well. So I'm already up anyway, so it's not that big of a deal. But if I answer, I'm sleeping well, except for the peeing many times a night. I'm gonna get serious about that one. Can I ask you kind of a fun question? I like to know how experts talk about POTS when they're explaining it to people in a social situation. So like if you are trying to tell your friends or acquaintances about POTS, but you do not wanna give them a technical definition full of medical terms, how do you explain it to people? Celine Gallagher: That's really tricky actually, because it is quite a complex condition. But what I say is it's a condition that affects the autonomic nervous system. And the autonomic nervous system is responsible for controlling a lot of the unconscious functions in our body or things that we don't even think about. So it controls our vision, our tear and saliva production. It controls the way we sweat, the way we digest food. And importantly, it controls the way that blood moves around our body and our heart rate. And when it doesn't work as it should, it can produce a lot of different symptoms. And one of the main problems is that when people stand upright, blood doesn't move to the top part of the body as it should but instead can pool in the hands and feet. And this can cause people to feel dizzy or lightheaded or like they are about to faint and to help move this blood flow around, the heart will beat faster and that can cause people to feel palpitations or a racing heart. And unfortunately there is no cure for the condition, but there's lots of things that can be done to help to support the autonomic nervous system. Jill Brook: So you had mentioned a moment ago about the comparison between POTS research and other kinds of heart rhythm research, and I was wondering if you could just talk a little bit more about that. Like are there differences besides just the funding? Like what about the communities or interests or what do you see as somebody who's done a lot of both? Celine Gallagher: Well, look, I think all research faces challenges. A lot of that is of course, related to funding . But I think POTS itself does have some certain unique challenges. One of those main challenges that I see is labeling POTS as belonging to a certain specialty like cardiology or neurology. As you know, many different specialists look after this condition. Yet a lot of the research funding that we apply for is often boxed into one type. So it might be a cardiovascular grant or a neurology related grant. So you know, you might apply for this type of grant but you may have a reviewing panel who's never heard of the condition, or they may think that it doesn't properly fit into the cardiovascular space or the neurology space. So it does create some challenges in attracting the kind of research funding that you need to undertake some of these studies. And that makes it even more important to have organizations like Standing Up To POTS that do really fund specific research in this area. And it's so important to have some protected funding for that. Some of the other challenges specific to the POTS space and one that we continue to face here in Australia is the lack of an I C D code for this condition. So this is the international classification of disease code. This is a global code that's attached to a condition. So if you present to hospital with POTS, or if you go to an outpatient appointment, mainly because of POTS, and then this ICD code is attached to that presentation, and that helps to determine both the prevalence of the condition, but also the healthcare burden that's related to. Here in Australia it is a part of the next version of the I C D code book, but it's not a part of our current one. And that leads to challenges in working out both the prevalence and the healthcare burden here related to POTS. And this is really important information for research because it helps to provide the denominator or the baseline information that we need to quantify the burden related to POTS. And that's really the starting point for a lot of our research and for quantifying what the problem actually is. And I know there's been great work done in the US in relation to that. And I think that POTS has now been incorporated into the current ICD version in the US so it does have its own code but we're still working towards making that happening here in Australia to help provide some baseline information that should help with attracting research funding to this area. So, there's some of the main challenges related too POTS that are unique to that space. Jill Brook: Well, and you're making me think about how many hurdles have to be cleared by the time you actually get good POTS studies. For example, clinical trials of treatments. Because I think you're reminding me that first you have to establish that there's even a problem and how many people have this problem and what is the burden so that the powers that control the research money, make it a priority to study it. And yeah, it's a slow road, isn't it? Celine Gallagher: There's a lot to be done. But as you know, there's a lot of similarities that have now been seen between POTS and long COVID. So I think that it's one thing that COVID has actually been good for is raising awareness about POTS and about dysautonomia in general. You know, it's sad that people have lived with this largely unrecognized for so long, but great also that COVID has helped to raise some of that awareness. So in a way that has actually helped us. Jill Brook: Yeah. And I know that your team is doing some wonderful work on that, and Standing Up To POTS is really proud to be funding some of that work. And I know that your research team is super organized. I'm the research liaison, so I get to see the reports and you guys are amazing. You're so organized and on task and doing beautiful work, and I'm so excited for some of your findings to work their way out. And I know that you guys are doing some of the really sorely needed work that's gonna, I think make this come to the next level of awareness. Celine Gallagher: We're very grateful to Standing Up To POTS for that research funding, which has helped us so much with undertaking this study. And also to Marie Claire, who has been the most amazingly super organized PhD student I've ever come across. So she's been really incredible and is so driven and passionate about what she does so it's been great. Jill Brook: Okay, so now let's go into a fantasy land where we don't have to worry about research funding, we don't have to worry about ethics review. We don't have to worry about reality at all. If you could wave a magic wand and instantly have the results of any study that you want, with no regard for money or time or ethics or anything, what research study would you want magically done? Celine Gallagher: Well, that really is a very tough question because there are so many different studies that it would be great to do. And it is hard to nut it down to one. But I think for me, if I had my choice and unlimited funding, I would throw a lot of money and resources at a project related to understanding better ways that the condition could be diagnosed with more objective measures. And I think it's because so many people experience such significant delays in time to diagnosis and there's so much heartache and self questioning and doubt and wondering what's going on that delay really has unquantifiable detrimental effects on people. And it also delays treatment. So I think if we could get that objective diagnosis quicker it's a time where we can intervene earlier and who knows, but maybe that leads to better functionality in the longer term. And we have so much available to us now in the medical space. We have artificial intelligence, we have machine learning. I think surely there must be something that can be applied to the POTS population to give us a more objective diagnosis. So as you know, people might have a tilt table test or they may have a standing test on one day, and it could be totally different result if we did that same test two days later. And that of course, leads to huge variations in diagnosis and huge delays for a lot of people who maybe don't meet that particular criteria on that particular day and maybe don't have access to specialists who understand that the condition can fluctuate over time. So, you know, although I think there's so much to be done. My number one priority if I had unlimited funding would be to throw it at diagnosis. Jill Brook: Right, right. So as we talk about all this stuff, it just always feels like if it weren't for all the suffering that has to do with POTS, this would be such a fascinating field of study. Do you ever feel like that? Like if you could just get rid of all of the pain and suffering and gas lighting, this would be a really, really phenomenal fun puzzle to work on. Right. Celine Gallagher: Oh, absolutely it's a huge challenge, so many opportunities, an amazing puzzle. The most ginormous puzzle of all time . And it's really fascinating. There's so much to unravel about the condition, so much that is unknown. Learning about the broad spectrum of ways that people can present with the condition, the different subtypes, the broad range of comorbidities, and the ways that those comorbidities interact or maybe cause a substrate, which is like a condition that allows another condition to happen, makes it really interesting. So maybe joint hypermobility creates this substrate and then that makes an individual more predisposed to developing POTS after they're exposed to a trigger like infection or hormonal change. So understanding that substrate, I think is, is really interesting. And maybe gives us an opportunity to pick people who are vulnerable early on. And perhaps there's some sort of early intervention that could be used to prevent onset, but who knows? There's so much we don't know, so much we need to learn. And I think so many of these research questions require a lot of groups to come together and work together in a collegiate manner to help us get the answers that are going to best serve our patient population. Jill Brook: Well, so speaking of groups coming together, I think you are part of a group that is forming or has formed in Australia to help bring more awareness and research, right? Can you talk about what is the state of POTS awareness in Australia? Do we even know how prevalent POTS is in Australia? And then what are you doing with your group and your conference? Celine Gallagher: Absolutely. So I think again, that the lack of this I C D code really means that we don't know the prevalence of POTS in Australia. And so unfortunately that's not a question that we have an answer to at this point in time. I can certainly anecdotally say that it's rising quite significantly. But what that number is, I don't know. POTS awareness in Australia is in general improving but still quite poor overall. You know, as I mentioned earlier, it's not something that's widely taught amongst medical nursing and allied health degrees. So that leaves many clinicians unaware about the condition. And one of the ways that we are trying to address that is through our conference that we have coming up. So this is a conference that we've called POTS Unmasked. It's running on Saturday the 29th of October as a one day conference. And the aim of this is really to raise awareness about POTS amongst healthcare professionals. So although our talks and presentations will be available for the broader community a little bit further down the track, the conference itself is really aimed at healthcare professionals to improve awareness about POTS. We are offering the conference both in person and online. And we have a really fabulous lineup of international and local speakers. So we have Dr. Andrew Maxwell, Dr. Laura Pace, Dr. Lawrence Saffron, all coming in to talk about the various aspects of POTS and comorbidities. And then we have some fabulous local speakers too. So we have Professor Chris O. Callahan talking to us about pharmacological aspects. Dr. Fraser Burling, who's looking more at Ehlers Danlos and the hypermobility side of things. Professor Dennis Lao, who's the head of our research group, talking about the Australian experience and Marie Claire Seeley talking about some of the long COVID and POTS related research. So we've got a really fabulous lineup of speakers. Our attendance is looking great, so we're really excited to be able to offer this. We also have some students who are presenting some posters related to their work. So they get to network and meet others in the POTS space as well. So, very excited about our upcoming conference. Jill Brook: Oh, that's so wonderful and it makes me really happy to know that there's such a vibrant POTS community in Australia because I'm in California and my day is just ending. Your day is just beginning, and I get this great feeling that there's always some POTS progress going on somewhere in the world. And , I know you guys absolutely are pulling your weight. Celine Gallagher: Absolutely. We're really proud to be able to contribute and yeah. It's great to know that there's so much going on in the POTS space worldwide. Jill Brook: So where can people go online to learn more about your conference? Celine Gallagher: Absolutely. So, the best place to find information about our conference is through the Australian POTS Foundation website. And that can be found at POTSfoundation.org.au and so that has lots of information about not for profit charitable organization the Australian POTS Foundation but also has lots of information about our conference and where you can learn more. Jill Brook: Wonderful. Well, Dr. Gallagher, thank you so much for taking the time to speak with us today. We really appreciate all the good work that you do, both working with patients and in your research and in your nonprofit charity work, and we hope that you'll come back and discuss your research findings with us when you have some. Celine Gallagher: Thanks so much for having me, Jill, and I'd be really delighted to come back. Jill Brook: Wonderful. Hey listeners, I hope you enjoyed today's conversation. 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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