Episode Transcript
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Jill Brook: Hello, fellow POTS patients, and fabulous people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we are interviewing Dr. Marie-Claire Seeley about her research findings on cerebral blood flow in POTS. Dr. Seeley is a powerhouse of POTS progress. She is on the faculty of Health and Medical Science at University of Adelaide.
She is a postdoctoral fellow and researcher with the Australian Dysautonomia and Arrhythmia Research Collaborative. She works clinically with POTS patients as she's a clinical nurse in addition to a PhD researcher. She is founder and director of the Australian POTS Foundation, and I'm sure I've missed
some things, but her research was the first to identify POTS in a majority of long COVID patients among a lot of other important work. She initiated a POTS patient registry for enabling more POTS research, and she has been public about her own lived experience with POTS. So today we are talking about her [00:01:00] great new research publication
that's out. Dr. Seeley, thank you so much for being here today.
Dr. Marie-Claire Seeley: Thank you, Jill. It's always great to speak with you and with Standing Up to POTS who, who funded that research actually, that I did into the post-acute sequela of COVID-19. And without that funding, we wouldn't have got that research up. So it is always a joy for us to come back and talk to you about it.
Jill Brook: Well, I'm so glad that that gave us an excuse to meet because like I said, you are just amazing with how much you are doing for this, this community. And so your newest article, congratulations, I know you have a lot going on, but the one we're talking about today was published in the Journal Nature Scientific Reports.
It was called Novel Brain SPECT Imaging Unravels Abnormal Cerebral Perfusion in Patients with Postural Orthostatic Tachycardia Syndrome and Cognitive Dysfunction. [00:02:00] So that's some big words. Maybe do you mind just like starting by, like breaking it down and saying what you studied and why?
Dr. Marie-Claire Seeley: Sure. It was a very long title, wasn't it? So essentially this is what we call a retrospective study. So that is, we looked at people in our registry who had a certain type of brain imaging. That imaging, the long name of it is single photon emission computed tomography. Most people in your audience will be familiar with CT.
It's, it's something that a lot of people have had on different parts of their body, and this one is similar, but it, it looks at the brain and it's actually quite an old type of technology. So in Australia, it's readily available for your general practitioner to use. They can send you for a brain SPECT we call it.
I'm actually not sure, sure in North America what, how frequently it is used, but often [00:03:00] individuals who are unwell, if they want a, a CT or an MRI, they might have to go to a specialist in Australia. But here general practitioners can order this study. And we noticed a few of our patients were coming through with long COVID actually initially, who had had these scans.
And that was primarily because they had been functioning very well. They might be a doctor or a lawyer or a teacher you know, working in everyday jobs. And then very suddenly they had significant issues with what we all term brain fog. And their GPs were at a loss to understand what was going on.
Usually they would send them for some other tests first, and then when this persisted for some time, they'll send them for a brain SPECT. And these first initial ones we saw had quite significant changes on these brain SPECTs. So what a brain SPECT does is they use a radio [00:04:00] tracer. So they inject people with this little tracer that goes through the bloodstream, and then they can take images of that tracer in the blood, in the brain.
And what it does is give us a view of where the blood seeps into the different parts of the brain and where it doesn't go in the brain, more importantly. So this is quite different from an MRI, which looks at the structure of your brain. Is there a problem with the actual matter in the brain? This looks at the blood flow and it's slightly different to another scan, the PET scan, that people might know from people with cancer often have a PET scan and in a PET scan that looks at actually the glucose metabolism in the brain.
So SPECT is quite specific. It doesn't really do anything else apart from look at that perfusion we call it, or the blood moving into the brain. And we noticed in these people that they had really marked changes. So there was areas of the [00:05:00] brain that just weren't getting the blood flow that they should be getting.
And then from that we thought, oh, this is interesting. We looked in the literature, there wasn't anything describing this in POTS. There was a little bit describing it in other conditions, and particularly in attention deficit disorder, which was interesting because anyone out there with POTS will know that that's a very frequently diagnosed condition with POTS and in fact
people might be familiar with Vidia Raj, Dr. Satish Raj's wife, who has done a lot of research in POTS also, and she once did a study looking at attention deficit disorder in POTS and she found in her study that actually there was a real similarity between POTS. You couldn't really distinguish people with POTS from people with ADHD except for the people with POTS who had issues with
memory and executive function and [00:06:00] concentration didn't have a history when they were young of that problem, whereas people with ADHD typically have a history of it when they were a young child. They might be hyperactive and have issues with concentration. So we know there's a crossover and there is the million dollar question.
Are these new diagnosis of young women with ADHD that we're seeing around the world really, ADHD, or is this actually a combination of POTS and autonomic dysfunction driving this issue? So, essentially what we did was, well, we'll have a look at our whole registry. We went back and we found about 60 people with, who had had this brain SPECT scan, and we actually went and extracted the data from that.
So just to be really clear for your audience, when you go and have a scan like this, the, the radiologist usually looks at the report and has a look [00:07:00] at the areas of the brain. They see little bright spots and lower color spots, and they make a clinical decision. They go, this one isn't normal in comparison to what I would usually see.
And that's what we call a qualitative report, and that's how most imaging is actually undertaken. When someone looks at your heart with an ultrasound, that person makes some measurements, but they also make some qualitative decisions. They'll go, Hmm, that mitral valve doesn't look like it's closing the way it should be.
We are gonna say that there's a problem there. And that's acceptable in clinical practice, and it's a normal way things are done. But in research, if you wanna go and quantify this and, and really look at it, you need something a bit more objective. We need numbers, essentially. And there is a way of extracting numbers from reports.
There is some when they take these images, there's actually some software that collects numbers. So we went and got those numbers and we call them Z scores. [00:08:00] And essentially what they do is they give us a normal population. So they say, this is what perfusion looks like in this group. Their numbers look like this.
And once it's kind of two standard deviations below that, we consider that abnormal because it, it's represented to be too far outside the normal population. So in most of the scans that we actually looked at, qualitatively, the neurologist, the radiologist had actually said, these are all abnormal. So almost everybody that had a scan had an abnormal report from the radiologist, and that was really significant.
And we had the ability to talk to one of the radiologists who had assessed most of these, and they were quite shocked by it. They, they normally see this kind of thing in an older population. And they hadn't seen, you know, [00:09:00] such young people with, with these marked features.
Jill Brook: Because your, your people had a mean age of 35, right? So these were young people.
Dr. Marie-Claire Seeley: Very young people. And normally these kind of scans are, you know, we are really often looking at older populations with. Conditions like Parkinson's or Alzheimer's that might be undergoing these scans. So it was quite unusual to see it. When we extracted the Z scores, what we found was that 60% of the population that we looked at had abnormal imaging.
Now, many, many of the ones that had normal imaging actually sat right on that borderline. So they were, let's say the Z score, it's two standard deviations away from normal. They were sitting at about 1.9, 1.87. So they, they still have quite low perfusion, but it just didn't tip them over into the [00:10:00] completely abnormal area.
Jill Brook: If I'm remembering correctly my statistics, so we call 'em a Z-score here, and when you look at a population's normal curve, two standard deviations means that you, you have only two and a half percent at either end of that. So to be in the worst on on to be on the low side two standard deviations means you're like in the worst two percent.
Dr. Marie-Claire Seeley: Correct. Correct. And another thing to know is that the, the population that is used as the normal population in these data software programs are older populations, 'cause that's who they're normally imaging. So the two standard deviations is clinically relevant to older people. And we, it's quite difficult to get a control population for these kind of tests because it means you have to go give somebody, you know, a [00:11:00] radioactive injection to, to essentially get that control population and that's not easily done understandably through ethics and so,
when we consider it on all fronts, this is really a bad result for the younger population. You know, if we had been able to look at a control population of similar age people, I think we would've found significantly even more significantly different measures there.
Jill Brook: Can I ask one more question? Okay. So already you have 35 year olds who are looking like they're in the worst 2% among older people. But was this laying down or was this standing up?
Dr. Marie-Claire Seeley: Hmm. Yes. So this is, what makes this quite interesting is not new to us that people with POTS have cerebral hypoperfusion or lack of blood flow to the brain. We know that through much of the work done at Vanderbilt and Mayo Clinic, especially in the early [00:12:00] days, they used like an ultrasound that you would look through
a little area in the temple to see blood flow when people are on tilt table. And we know from that, and we did some work here in Adelaide as well, that showed that the people with POTS definitely have lack of blood flow in comparison to controls when you put them on tilt. But of course, the brain SPECT is actually done laying down.
And it's, it's, the whole testing is done supine, so laying on their back. And so this was the thing that really caught our attention. We have a mechanism that is already in use, an old technology that actually is picking up cerebral hypoperfusion in a clinical population, when previously we thought the only way of picking that up was to put people on tilt tables in a research center, and that's not accessible to doctors, right?
If they've got a patient sitting in front of them, they can't send them off necessarily to the Mayo [00:13:00] Clinic and have a transcranial doppler done to, to see what's happening. Those kind of tests are generally only done for research purposes. So this was really surprising to us that you could see this lack of perfusion when these people were laying down in a CT scan.
Jill Brook: Do you think it would be even worse, then when they stand up?
Dr. Marie-Claire Seeley: Yes, we do think it would be worse, and that is the next step really. We have to think about whether there is an indication for us to think about a protocol that would be beneficial for doing in this population. For instance, when you put this injection into the patients, that's when the, the image, if you want, is taken up into the brain so that the actual radioisotope is taken up and it kind of sets at that point in time.
And when you take the image [00:14:00] even 10 minutes later, what you're seeing is the point at which that that radioisotope actually perfused into the brain. So it is possible that we could stand people for a period of time and, and inject them with this and perhaps look at them and see if, if that shows a difference, whether that would be clinically meaningful is not entirely sure for us.
But it would've been interesting to know those people that didn't have abnormal SPECT scans according to the Z score, whether if we'd stood them up and done that, it might have shown quite a dramatic difference.
Jill Brook: Wow. And, were very many of these people fainting?
Dr. Marie-Claire Seeley: So you might be aware that actually when studies have been done to look at fainting in POTS populations on tilt table, actually controls are more likely to faint than POTS patients. So POTS actually is a condition as [00:15:00] Satish Raj often says, of almost fainting condition. Now, we do know, of course, lots of people with POTS do faint particularly if they're going through a flare just as any other person would, if they're, they're quite unwell.
But generally POTS people feel like they're going to faint all the time, and then they don't. And that's because they have these abnormal responses that drive this heart rate really high, basically to keep them conscious. And so they're feeling all the feelings, like they're gonna faint, but their heart rates you know, are really high.
What we did find in this population, we had a really good look at what other conditions they had because they, you know, there could be other reasons for this happening in them, and so, for instance, almost half of the population had migraine. Now we know migraine's really common in POTS. Almost half of the population also had hypermobile EDS or Ehlers Danlos syndrome, and about [00:16:00] 40% of them had ME/CFS.
And so we did some statistical analysis to control for these extra conditions to see if they were kind of contributing to these low perfusion scans. What we found was that actually the people with ME CFS weren't as likely to have abnormal findings, which was a bit of a surprise to us. But the people with hypermobile EDS definitely were, so that seemed to be a risk factor for having this higher proportion of, or, or difficulty with blood perfusion to the brain.
We also looked at quality of life in these people. So we wanted to see does having more, more regions of the brain with abnormal perfusion make you quality of life worse? And actually the answer to that was no. No, in terms of they had similar problems. And [00:17:00] so even people without lots of regions of the brain, hypoperfuse, they still had
things that were causing them to not function as well during the day. But when we had a look at what we call predictors, so you can do a special analysis that controls for variables that we think would affect this. So if you are older, you might have worse problems. There are sometimes differences
between men and women, and we controlled for all these other conditions that they had. And what we found was determining quality of life in the end was having higher autonomic symptom burden. So we used a tool called the Compass Tool, and that looks at all the different features of autonomic symptoms. Having
higher gastrointestinal issues, on a, also a special tool that we use to look at gut, the upper gut function, and having more than one region of your brain [00:18:00] being affected by cerebral hypoperfusion also predicted quality of life. So those three things seem to be the things driving the really low quality of life scores in our population, and
that isn't surprising when you think about it. It, it was interesting to us that none of those other conditions predicted that, so ME/CFS didn't predict it, having long COVID didn't predict it, but having these high autonomic scores, having a lot of problem with your gastrointestinal function, particularly in the upper gut and having multiple regions of your brain
cerebrally hypoperfused was what predicted how well your life was in terms of quality of life.
Jill Brook: Wow, that is important. And I mean, especially because you know, the a, a major newspaper just yesterday came out with a an editorial from a woman who just wrote [00:19:00] a book who was making the argument that POTS is not real and that we're over diagnosing POTS. And it's just a psychological, even POTS patients who are fainting, it's, they're just psychologizing it.
So I really appreciate that you are proving that there is something real going on here. But when you were just talking about quality of life, one thing that caught my eye in your study is that it says, notably the overall cohort's mean health utility score was at a level below that of other chronic health conditions such as chronic renal failure, diabetes, and cardiovascular disease.
Dr. Marie-Claire Seeley: Yeah, and we were fortunate enough to do a study probably about two or three years ago. It was one of the first studies that we did as part of my PhD here in Adelaide, South Australia. We were quite a small, little population, so a couple of million people here, but there's [00:20:00] a great study that is done every few years where they collect
quality of life data from the general population and that data bank uses the same quality of life tool that we use for our patient registry, which we didn't realize when we first started the registry. And we incidentally found out that there was this great resource of normal or everyday people in South Australia.
So they're living in the same state in the same area
as our population. So we were able to have a look at what our young population looked like compared to people that we pulled out of this normal population that were the same age and the same sex. So comparing apples with apples living in the same state, the same sex, the same age, and it was markedly lower quality of life using this tool.
And we also, because this survey tool is used all around [00:21:00] the world to assess multiple disease states, so it's one of these special surveys that can be used in any condition. You can use it in a normal population. So it's regularly used by health economists to look at impacts of diseases and and also quantify the economic impact of those diseases.
And so we were able to then compare our cohort, not only with this normal cohort, but with the many disease states around the world where this tool has been used. And we were able to show that the quality of life in our cohort, and at that time we looked at 200 people. So it's not massive, but it's not small either, and it's quite representative of what we still see in, in our larger numbers now that we've got a bigger registry. But it was worse
than people with chronic kidney disease, which is known to be extremely impacting on life, particularly for those on dialysis. Worse than chronic [00:22:00] respiratory disease such as chronic obstructive pulmonary disease, worse than cardiovascular disease, worse than HIV and worse than most cancers.
There was one study where it looked collaboratively at a whole group of cancers. The only condition that, that wasn't, that POTS wasn't worse then, but was very close to the same, was multiple sclerosis. And multiple sclerosis is a condition that's known to be associated with very poor quality of life.
And it's also a condition that, if, for want of a better word, has been thought to be a distant cousin of POTS for for many years. And in some of the initial authors around POTS in the early nineties and the late eighties when they were looking at what is this weird condition that seems to affect these young women?
Someone did hypothesize back then that maybe this is an abortive type [00:23:00] of multiple sclerosis where, for want of a better word, the autoimmune mechanisms have affected the small nerve fibers, but not yet progressed into these large nerve fibers. And I think in America you'll be aware that there are, for one of your famous actresses over there who has multiple sclerosis, she recently came out, her daughter has POTS. And that's an interesting kind of connection there. We haven't been able to show it in research. It's quite difficult to be able to show that, but there is, there is some consideration that maybe these two conditions may be connected in some way, at least mechanistically.
Jill Brook: Oh, I didn't know that. That's so interesting. But, but speaking of the brain. So you looked at a whole bunch of different regions of the brain and as far as I could tell all of them but one, on average, was indeed having issues with hypoperfusion. So probably that other one, while it was real close [00:24:00] to average, but there were so many, that might have just been a statistical,
you know, anomaly. But you found that the worst or the most affected regions of the brain were the prefrontal and sensory motor areas. Can I just ask, what, what do those parts of the brain do? What, what would that mean for people?
Dr. Marie-Claire Seeley: Sure. So when you just think about the physicality of your brain, this, these frontal areas and prefrontal sit, you know, we're talking about this kind of temporal area and the frontal lobe here and the sensory motor lobe actually sits right in this kind of middle section here too, and so it's all sitting towards the front of the brain where there are issues.
And most of your listeners will be aware of the concepts of what we call executive function, and they're those abilities for us to undertake higher thinking tasks and coordinate those thinking tasks. So they're things [00:25:00] like being able to concentrate, number one, but to be able to plan ahead, to be able to hold those short term memory things that we hold in our brain.
And so a lot of your executive function tasks sit in this frontal area, and that's where the ADHD crossover probably comes in with, with POTS. You know, so these are people that will have similar experiences of brain fog, just having a slowness or of in being able to respond to what their brain needs to do.
I think most of our POTS patients will know that you have days where you just feel like your brain is heavy. You can't grasp the words you need to grasp quick enough. You can't think quick enough to do the tasks that you're going to do. You might have difficulty planning, holding memories. Your shopping list may, you know, just go out of your head even though it was three items.
So they're all your executive function. [00:26:00] I think what was interesting to us, we expected if we were going to expect any problems, it was probably in that area because this is the number one thing that people with POTS talk about is brain fog. If they have that particular problem, it's all around this executive function issue.
And that, of course, is a big issue. If you are working, and this is where we've probably seen more appreciation of this with long COVID, where you're seeing large amount of people suddenly not being able to carry out their tasks that they could do two weeks ago, before they got COVID. And now six months later, they're still having trouble being able to do the work that they would do standardly every day.
And I can think of many cases that we've seen in clinics of teachers, for instance. You know, can you imagine trying to teach in a class and think through what you're planning for them, adjust to all the changes that are [00:27:00] happening in the class. Being on time, being able to answer questions quickly, quickly that people are asking you, your students are asking you.
So that executive function task is really important to carry on our everyday jobs. And it, it is probably one of the most significant factors that we see clinically, that that mean that people have to change their jobs. But also we saw the sensory motor area and, and this was interesting to us. Now you need to understand that the function of each area of our brain is not set as a population.
So it's a little bit more organic than that and a bit more fluid. And, but generally this area of the brain, the sensory motor, takes in a lot of information from our bodies. So for instance, the senses in the peripheries. So someone with sensory motor function might have more [00:28:00] senses of tingling, numbness, feeling uncoordinated, and just being able to process all that information coming back from, from the body into the brain.
That's where it's all kind of processed in there and we know that that's an issue in POTS right. There, there are a lot of people with a lot of sensory issues that when we go do testing on them, we can't find anything wrong with their nerves. For instance, they might feel like they've got numbness and tingling.
They might feel like they're uncoordinated, but when we test the nerves out in their legs and test the function out there, it all seems okay. But back here in the brain, it's not processing and integrating that information very well. And so that was really interesting to us to see that.
Jill Brook: Oh my gosh. Yeah. That's so valuable to to know this. Wow. And just to be clear, I think you kind of mentioned it, but just just to make sure that people [00:29:00] hear it. I think that you found that it did not matter what the POTS trigger was, right? You found this kind of consistently across the triggers.
Dr. Marie-Claire Seeley: Absolutely. And I mean, to give you an idea, I think generally, in most populations that we see, about 40% of people would say that they had a virus prior to getting POTS. Now that's accounting for the fact that about an equal number of people don't know what caused their POTS, and because there is a long delay between people having symptoms and diagnosis in POTS, for instance.
It's very common in clinic to see a 17, 18-year-old who will say to us, I don't know what happened, but when I was about 13 or 14, suddenly I started fainting. I couldn't stand at school. I had to stop all my sports. Now, because there's that diagnostic [00:30:00] delay, we often don't know, was there a virus that that person got at that time or was it just a random thing, or was it puberty?
So we have this 30 or 40% of people that we don't know what triggered their POTS. But with the advent of long COVID, what we have now is a large population of people who we have a very definite trigger. They know they had COVID 'cause everybody was being tested and they specifically can relate it to that.
And also the awareness meant that there was a lot more people really recognizing, yes, I do have something that has, you know, being triggered by this condition. In our little population that we looked at here, we had a few people with concussion. And to be honest, we would've thought that there were differences in people with concussion.
Concussion is a very topical issue in the sports world, both in North America and here in Australia with our different football codes. And those people suffer, you [00:31:00] know, with quite significant impairment and you can get POTS from concussion. Generally, most populations, it's about seven to 10% of POTS populations have, have got POTS from a concussion.
But we saw no difference in those who had gotten concussion POTS and those who got long COVID POTS and those who didn't know what their POTS came from. Basically, it, it is a small population and we would need large, larger population studies to really understand this, but it seemed, from what we saw, that it didn't make a difference what caused your POTS. It seemed to have the same effect in the brain.
Jill Brook: And one more question. Do you think most of these people had this SPECT imaging done before they knew they had POTS and before they might have been doing all the things that one would do, such as take in more salt [00:32:00] and fluid and wear compression stockings and blah, blah, blah.
Dr. Marie-Claire Seeley: Yeah. It's a great question, and it was a question that we couldn't answer entirely, and that's because we didn't order these SPECTs. So some of them were done at different times throughout the diagnostic journey. We did have a, as much a look of at that as we could, and generally what we came to the conclusion was most people had had this brain SPECT before they were diagnosed with their POTS.
So most of them were not on medications for the condition. There were, you know, probably about 25% that were on it. And, you know, generally people fast for these studies in any case. And they were mostly done, another interesting thing, just through the scheduling in the radiology clinic, most of these studies were actually done around between 12 and two in the afternoon.
We had dates, timestamps [00:33:00] on them, which was helpful for us. Now all of us know that POTS is generally worse for people in the morning, so most POTS testing is, is should be done in the morning when the autonomic nervous system is little bit more unstable. That gives us a better picture of kind of their worst episodes.
So again, there were features in this that meant that we weren't capturing these people exactly as they would be at their worst. But that is another interesting thing to us is, you know, if we really treated all of these people, does it improve their brain SPECT? And it is reasonable if these people are still functionally incapacitated to do follow up exams for them.
And that will be up to their treating doctor. But it is something that we would be interested to know whether it does improve with the treatments that these people are offered.
Jill Brook: Yeah, I was gonna say, if, if we could ask you to put on, I guess, both your, your researcher and your clinical [00:34:00] nursing hat. Do you have any kind of practical advice for people who suspect that their brains are not getting, like do you think that there's certain things that are more helpful than anything else for helping people get their cognitive function back.
Dr. Marie-Claire Seeley: Yeah,
look, we, we are forever using that phrase, POTS is heterogeneous. So, layman's terms, it's, it's probably caused by multiple different things. And different things for each person, and it, it is kind of the common end pathway of multiple factors. And even in the long COVID population, that's true, they all got COVID, but the underlying driving mechanism that their body has initiated from the COVID virus reaction may be different in each person. And that means that the treatment,
the management of it is also different and it's often hard for me as a clinician [00:35:00] researcher, but also somebody with my own experience. I've had POTS for over 32 years, and just a little side story for your listeners. I recently, I traveled a lot when I was young and I, my best friend was my pen pal and back in the days of no internet or you know, not much ability to contact people through phone either,
I wrote to her a lot. I discovered, and she recently found all those letters stored away. So I was able to go back and look through this little diary of letters, me writing to her almost every week from different places around the world. I was and including during the time when I developed POTS from a virus that I got when I was in the Middle East.
And, you know, back 32 years ago, I wrote to her not understanding POTS, about the extreme difficulty I had in getting up and showering every day. And, and here I was writing, you know, this is not [00:36:00] anxiety. It's every time I have a shower, I'm, you know, exhausted. I can't breathe. My heart's racing. I thought, wow, 32 years later, actually that's still the case for me every morning.
You know, it's still an effort to shower, to, to do those things. I'm saying that just to give the context of, you know, even knowing all of this stuff, it's POTS is still a management issue. It's about knowing your own body, what your own triggers are. I personally find that if I don't exercise now I don't go out and go to the gym, but I do go walking.
I do try and swim when I can. I noticed that my functional ability to concentrate to undertake, you know, the tasks that I do as a researcher gets worse and worse the less I get out and be active. And I'm not saying that that's an easy thing either. It, it's pretty [00:37:00] hard when you're feeling the way you are to, to make yourself go out, especially in Australia,
and the heat. Now, from my, my understanding of that is I, I talk a lot to my patients about being skeletal muscle dependent, and by that what I mean is there's only a couple of ways that blood gets back from your peripheries, from your feet to your brain. And that is either by the autonomic nerves squeezing the vessels to get the blood back and, and getting it back there.
Or by your heart rate increasing. Or by your skeletal muscle pumping the blood. And if you sit all day in a chair, which I do as a researcher, with muscles that are not actively moving you, and you have an incompetent autonomic nervous system that is not squeezing those vessels. And if you've, taking something like Ivabradine, which I do, [00:38:00] to keep your heart rate down, you are not getting blood flow back to your brain.
And I think if people start thinking about those things, they'll notice, yeah, that is the time when I struggle with brain fog. And that's a big issue for our young people at school all day sitting. You don't have to be standing for you to lose perfusion in your brain. Just sitting and not moving will do it.
Getting up and moving regularly I think is really critical to getting that blood flow back to the brain, 'cause obviously the more fatigue your brain is getting, the more fatigued you'll feel, the less you engage in exercise, and it just becomes this vicious circle. I understand that there are people that are bedbound and that is not where they're at, but even within that context,
context, having even some passive movement of muscles recumbent movement would be beneficial. And we all, we all inherently know that the [00:39:00] human body does need to move. I think for everybody with POTS, a really good thing is to, to watch the astronauts coming back to Earth,
and I, I think somebody needs to make some memes about that.
Right? Because this is like, yeah, this is us every day. You know, they, they effectively give these astronauts POTS, that's what being in space does, right? Because you get, you get no gravitational forces and so you, the blood return is, is an issue. Your heart shrinks 'cause there's not so much blood flowing back to it.
You are not getting the skeletal muscle pumping. And so these people come back to earth really deconditioned. Now our POTS is caused not, I don't believe by deconditioning. I know that for myself. But it is the same effect. We have the same issue with not being able to get blood back to the heart. And that's something that we, you know, it when, when it doesn't come back to the heart, it doesn't go back to the brain. When it doesn't go back to the brain,
we get brain fog. So, there are also, you and [00:40:00] I were talking, Jill, about some of these, you know, new things that are being discovered around micro clots. You know, the, the jury's still out in the research, but definitely we know, we see some people with different kind of antibodies that are found in their blood that cause those little clotting mechanisms and being able to clear those clots and can help with blood flow to the brain.
And so it is important that people are investigated for some of the things we do know, things like lupus, antiphospholipid syndrome, all of these things can cause clotty blood. And our brain has very, very small little vessels. And if you are getting little micro clots throughout the brain, you're definitely gonna get issues with perfusion.
So it is important to make sure those things are investigated.
Jill Brook: Yeah, I just only recently found out that I have a genetic variant that makes my body unable to breakdown fibrin clots. So just the normal [00:41:00] clots that get built up in the course of life, I hadn't been breaking them down. And I learned that there's a couple supplements that can help do that and I felt very lucky.
Like, oh, for once, here's a, here's a laboratory finding that has an easy solution. But it has made a big difference for me just taking the lumbrokinase and some blood thinners and I, I can't believe what a big difference it's made. And. Boy, I wish I'd known that 20 years sooner.
Dr. Marie-Claire Seeley: And this is, this is the ongoing problem with POTS. You know, people, I think anyone who's been diagnosed with it will understand that journey of discovering all these different things that it could be. Oh, it could be this. And each new thing you discover, you know, oh, Jill got better 'cause hers was clots.
Oh, is it? That's what causing mine. No, it's not. But you know, there are multiple different things that can cause POTS. And it is a matter of working with a physician who can really do that personalized [00:42:00] medicine journey with you. Looking at what your triggers are. How did it start? You know, what it, what's your family history?
Unfortunately, I don't foresee that we'll ever have one single answer to this condition. And I know that's what everyone wants, and it's what I wanted too, you know. There was a switch, someone switched one day and I got POTS. So why can't we just switch that switch off? And the, the real answer to that is it's, it's actually in the complexity of your body's immune system, and
there are so many variables there that can be causing your POTS, and unfortunately, you know, it is probably gonna be the case that this, this sits within the domain of personalized, individualized medicine and, and really exploring the individual's own circumstances.
Jill Brook: Well, I feel like what your, your publication has just done though is made it so much easier for us to get taken seriously by those physicians.
Dr. Marie-Claire Seeley: [00:43:00] Yeah, look, we, we really, we really hope that is the case. Some, I think we're all familiar with, you know, the misdiagnoses that these people go through. Anxiety, functional neurological disorder diagnoses that, that, you know, that is a real condition, but it's not the same as POTS. And you know, not everyone's gonna have the chance to get a brain SPECT, and nor do we think they should.
And I should be clear about that. The people that had these brain SPECTs had brain SPECTs because they had significant cognitive dysfunction that was disabling to them. So this is not 61% of all POTS patients. This is 61% of very unwell POTS patients who had this. And also the other thing we should be clear about is the brain SPECT findings
didn't change clinical management, because we actually don't have anything else to offer these people. What it did do do for these people [00:44:00] though, was give some explanation of what was going on, and validation is actually an important part of the patient journey, but it also enabled their clinicians to understand that this was a real
organic issue. And for some of them that made a big difference. For instance, in work cover incidences where they were able to give some quantitative evidence that there was something wrong organically with their brain in terms of, of blood perfusion. And that did make a difference for, for their ongoing stability in terms of payments and so on.
You know, we're always looking to the peripheries with POTS.
Oh, it's issues out in the legs with the vessels and so on. But maybe this does all originate in the brain. And we need to be exploring that, you know, far more mechanistically. And I, I know I've presented this paper actually at a couple of conferences, including at the American Autonomic Society Conference, and I had [00:45:00] some very good discussions
with clinicians from Mayo, for instance, after, and there is definitely an awakening in the clinical world and research world. People that are interested in POTS around looking more to the brain for what is going on here.
Jill Brook: Wonderful. Wonderful. Is there anything else we should say about this?
Dr. Marie-Claire Seeley: No, I just would like to say that I heard from Jill that you have something like 55,000 people from Australia who, who list, have listened to your POTScast. And so for those in Australia looking for help with POTS, you can go look at the POTS foundation.org. We are really here to try and help you out.
We're just a small volunteer organization, but things are really happening in Australia and we're hoping that more and more resources are gonna be coming out to everybody here to help them in their own POTS journey.
Jill Brook: Wonderful, and we'll put a link to that [00:46:00] in the show notes to make it easy for people, because yeah, if you are in Australia, you need to check out the Australian POTS Foundation website, and I mean, you guys have a clinician directory and tons of great information, news, events, ways to get involved. You are making
so many good things happen. We just appreciate you so much, Dr. Seeley. Thank you. Thank you. Thank you for being here.
Dr. Marie-Claire Seeley: Thanks, Jill. Lovely to be here again.
Jill Brook: Okay, listeners, that's all for today. We'll be back again soon with another episode, but until then, thank you for listening. Remember, you're not alone, and please join us again soon.
