Managing Dysautonomia with Svetlana Blitshteyn, M.D.

[00:11] Jennifer Milner: Welcome to Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other artistic athletes. This is co-host Jennifer Milner, here today with Dr. Linda Bluestein. Before we introduce today's special guest, please remember to subscribe to the Bendy Bodies Podcast and leave us a review. This really helps grow the audience and increase awareness about hypermobility and associated disorders. This podcast is for you.
[00:41] Today we have the great pleasure of speaking with Dr. Svetlana Blitshteyn, board-certified neurologist and director of the Dysautonomia Clinic. She's also the clinical assistant professor of neurology at the University at Buffalo Jacobs School of Medicine and Biomedical Sciences. Dr. Blitshteyn completed her neurology training at Mayo Clinic Graduate School of Medicine and is a member of the American Academy of Neurology and American Autonomic Society. She serves on the medical advisory board for multiple nonprofits including Dysautonomia International, Dysautonomia Information Network, and the Ehlers-Danlos Society.
Dr. Blitshteyn has been an invited speaker at national and international conferences, including at the World Health Organization. She has been the principal investigator on a number of important research studies concerning POTS and autoimmunity, POTS and pregnancy, POTS and vitamin deficiencies, and others. She co-authored a popular patient handbook called POTS: Together We Stand: Riding the Waves of Dysautonomia and has been interviewed by numerous media outlets including U.S. News and World Report, Medscape, Neurology Today, New Scientist, and others.
[01:53] She's the recipient of the Patient's Choice Award 2019 from Dysautonomia Support Network, Business First 40 Under 40 Award, Mayo Clinic Neurology Research Award, the American Headache Society U.S. Human Health Award, the American Academy of Neurology Student Prize, and others.
[02:25] In our last episode, we broke down the whole umbrella term of dysautonomia and talked about POTS specifically, also looking at small fiber neuropathy and breaking down Chiari malformation, digging into what is under that umbrella with dysautonomia, going into POTS, going into how people can sort of get a diagnosis of it. And we wanted to go a little bit deeper here. If somebody has a diagnosis of POTS, if somebody is hoping to minimize their own symptoms, what are some things that they can do to help minimize the symptoms of POTS, either with their diet, with over-the-counter medications, and/or environmental changes? What would you suggest?

[03:11] Svetlana Blitshteyn, M.D: Excellent question. So the mainstream therapy consists of a non-pharmacologic approach, which we always employ first. We ask our patients to increase their fluid intake to at least 2 liters per day with a combination of electrolyte drinks and water. Similarly, we ask patients to increase their salt intake in the form of sodium chloride through the use of dietary salt and salt tablets, and there are quite a few out there. We advise them to try wearing compression stockings and abdominal binders to cause external vasoconstriction and get blood back up from the lower body to the heart and the brain. We also recommend sleeping at an incline of about 4 to 6 inches, which may help the body conserve sodium and water at night. And we ask patients to eat small frequent meals low in carbohydrates.
[04:09] Exercise is an important management strategy, which is not without controversy. First, as I mentioned before, exercise intolerance is one of the hallmarks of POTS, but exercise is also necessary in order to prevent secondary deconditioning. There is still some prevailing belief among some of my colleagues that POTS can be caused by deconditioning, but several studies have challenged that concept by demonstrating abnormal cardiovascular physiology that's at play in POTS patients versus healthy but deconditioned patients.
[04:48] So ultimately, we recommend an exercise program that diminishes the effects of gravity and allows the patient to exercise while sitting or lying down. Using a recumbent bike, rowing machine, or swimming in the pool has been the most effective exercise that our patients can tolerate. The key is to start low and go slow to build up the exercise capacity to at least 30 minutes of exercise, 4 to 5 times a week. Now, unfortunately, in many patients that come to me — which tend to be the sicker patients — medication is going to be necessary to control the symptoms and allow the patients to start exercising in the first place.

[05:36] Dr. Linda Bluestein: Very good. And in terms of when you were mentioning sodium chloride and/or electrolytes, do you have any more specific recommendations? I know there are tablets, powders, different dosing regimens perhaps, and of course nausea can be a side effect of taking sodium tablets, and there's a lot of products out on the market that are often marketed towards athletes. Some contain sugar, some contain artificial sweeteners. Do you have any additional details, since that's something that people on their own might make better or less good choices about?

[06:16] Svetlana Blitshteyn, M.D: Yes, it's a very important question. And interestingly, I do not have any preferences and leave it up to the patient by saying whatever you can tolerate. As long as there is sodium chloride — which is your table salt — and as long as you're consuming at least 5 to 7 grams for our young patients, some references say even go as high as 10 grams. If you have no hypertension, if you're a young person, you're welcome to liberalize your salt intake as much as you can. And that can be through whatever sources you tolerate. Some patients like to drink Gatorade — fine with me. Other patients can tolerate Pedialyte — great.
[07:06] Yet, as you mentioned, some people complain that taking in a lot of salt causes nausea, in which case you want to pick those tablets that are enteric coated with a coating that prevents their dissolving in your esophagus and stomach. Many brands are available. I have no stock in any of them, except to say you can also use a salt shaker. Take your salt shaker and add salt to your water. Some people are not able to tolerate salt tablets in any form, so at that point I say just take simple salt from a salt shaker, add it to your water, add some lemon, add some cucumber, and drink this throughout the day. That way you end up consuming both fluids and salt. Easy. You're welcome to salt your food. Salty snacks can be a very good way to boost your oral load of sodium and water, and you can pick pretzels or nuts or olives, whatever you can tolerate.
[08:26] Some of our patients have allergies and sensitivities, which is why I'm very liberal and why I say whatever you can tolerate to get that amount in — that's fine with me. For our sickest patients with severe gastroparesis or severe swallowing difficulties, that is a big problem. They are unable to consume enough fluids and salt, and that makes it very difficult, which is partially why their POTS can be out of control.
[09:01] Only in rare cases do I ever consider things like continuous or chronic intravenous fluids. I typically do not recommend a port or a PICC line, even though many of our patients really feel better with intravenous saline. Long term, it's not a good option. Now, some of my colleagues don't use that at all under any circumstances — I am more liberal on that, and sometimes these are necessary. For example, you can use them as needed. Typically I use them when a patient with POTS experiences a significant deterioration following a viral illness like the flu, like the coronavirus, like a GI bug, in which case I will refer them to get IV saline, and that typically helps them to feel better.
[10:03] A special consideration should be given to our patients with Ehlers-Danlos and dysautonomia who have severe dysphagia, or swallowing dysfunction, or severe gastroparesis, where they are unable to consume that much fluids and salt. We have to be cognizant of that and make special arrangements for these patients. But in the vast majority, try to utilize them only on an as-needed basis and try to consume all of your fluids and salt orally.

[10:35] Dr. Linda Bluestein: That sounds good, and I'm really glad that you brought up the saline infusions because that definitely is a very important topic to address. And then in terms of other specific things that people might be using — I know one thing that a lot of my patients use is soy sauce. It's high in sodium, but I also have the concern about the monosodium glutamate, or MSG, especially for people who have headaches. Do you have any thoughts about that?

[11:01] Svetlana Blitshteyn, M.D: Again, everything needs to be individualized. If you have a patient with POTS and chronic migraines that are triggered by food, then of course soy sauce isn't going to be the option for you. But if you have a patient with POTS who can tolerate soy just fine, fine by me. I think at the end of the day, to me as a clinician, it's more important that this amount of sodium chloride and amount of fluids are in your body on a daily basis than the sources. Of course, one can argue that there are healthier sources and less healthy. In this patient population, especially those with significant allergies, sensitivities, gastroparesis, or abdominal pain — whatever you can find to get you to your daily recommended allowance of sodium chloride and fluids, that would be fine with me.

[12:03] Jennifer Milner: Okay, excellent. Thank you. I love hearing the overall theme that it depends on the patient and that it should be individualized — that there are some great broad strokes that you follow, but you also look at each person and say this person might just need this, and so we're going to do this. That's a great approach.
[12:26] I wanted to change gears really quick. In our earlier conversation, you had mentioned a couple of times fatigue and sleep disturbances being something that goes along with dysautonomia and POTS specifically. So in this population, how common are sleep problems and what can be done about them?

[12:46] Svetlana Blitshteyn, M.D: That's a very good question. If you look clinically and ask patients, a vast majority will say that they experience significant sleep disturbance, whether it's insomnia, difficulty falling asleep, difficulty staying asleep, or both. And when researchers tried to study that question, mixed results came in, with some studies showing that there were no significant abnormalities on sleep studies, and yet other researchers finding various abnormalities. So what that tells us, as with a lot of things in medicine and neurology, is that it can be hard to objectively catch these manifestations.
[13:35] When we talk about the Ehlers-Danlos population, there we have more evidence that there is a higher prevalence of sleep disorders such as obstructive sleep apnea and central sleep apnea, as well as restless leg syndrome and other sleep disorders in patients with Ehlers-Danlos. So I would say it's a very important area that has to be addressed. Every day with my POTS patients, we discuss strategies to improve sleep. And when there is significant sleep disturbance, I always make it a priority to have a thorough evaluation and treatment, because as I always say, you cannot get better if you have severe insomnia. You cannot get better if you sleep 4 to 5 hours every night. You cannot get better if you have untreated and undiagnosed sleep apnea.
[14:34] Just a simple example — this happened yesterday. I had a young patient with dysautonomia, POTS, and Ehlers-Danlos syndrome, 17 years old. By all stretch of the imagination, she should not be having a sleep disorder because she's young and she's not particularly overweight. But that's what we suspect when patients state that they sleep 9 or 10 hours every night, then take a nap lasting 4 to 5 hours, and are still very tired. Lo and behold, I sent her for a sleep study, which returned with very abnormal findings of severe obstructive sleep apnea. So I think that's an area that needs to be emphasized when you are evaluating patients with both POTS and Ehlers-Danlos Syndrome.

[15:29] Jennifer Milner: Thank you.

[15:29] Dr. Linda Bluestein: And we know that fatigue and sleep definitely go hand in hand, and you had mentioned in our earlier episode some of the common comorbid symptoms like fatigue and headache, and some comorbid conditions like small fiber neuropathy. Can you talk a little bit about why these are important to address and what types of strategies you might use in treating those?

[15:53] Svetlana Blitshteyn, M.D: So as I mentioned, patients with POTS present with multiple comorbidities. At least 80% of patients with POTS report at least one comorbid condition. The symptom burden in our patients is very high, and when you address these comorbidities, you improve symptom burden, and therefore you improve overall health, overall well-being, and hopefully the functional status.
[16:25] So how do we do it? Well, first of all, we have to identify those comorbidities and diagnose them correctly. If they are unidentified, they're not going to be treated properly. With the example of my patient with severe sleep apnea, it's very important to look for them. Don't assume that because you have a young teenage girl who appears to sleep 9 or 10 hours that there is no sleep disorder — send them out for a sleep study. That's very important. Similarly, GI symptoms are very common in patients with POTS. True. But don't assume that this is part of POTS symptomatology and you should just ignore it. Get a gastric emptying test. Identify whether they have gastroparesis. Do check them for mast cell activation syndrome. Identify whether they have that comorbid condition as well. Because very commonly, if you identify mast cell activation syndrome and you treat it appropriately with diet and medications, patients improve — and interestingly enough, even their orthostatic intolerance and POTS symptoms may improve when you dig deeper and identify these underlying conditions.
[17:53] Similarly with autoimmune disorders — I need to talk about that because time and time again I have patients who are young women in their 30s, 40s, and 50s who come to me with severe dysautonomia, labile blood pressure, severe POTS, joint pain, all kinds of other underlying issues, maybe positive autoimmune markers, maybe some dryness — dry eyes, dry mouth. Dry mouth is very common in our patients to begin with. They come to me and their Sjögren's antibodies are negative, so their doctors are confident that they have ruled out Sjögren's and rheumatoid arthritis and lupus. This is not the case.
[18:41] What we know is that Sjögren's is the second most common cause of autoimmune neuropathy and often presents with small fiber neuropathy and dysautonomia. And at least 40% of patients with Sjögren's have negative antibodies, especially if they present with neurologic symptoms. So when you have a high index of clinical suspicion and when you suspect that there might be an autoimmune disorder — maybe it looks autoimmune but all of the standard antibodies are negative — send them for a minor salivary gland lip biopsy. I have diagnosed some of my patients with severe dysautonomia, bedbound patients, with Sjögren's syndrome. And if it's not Sjögren's syndrome, there may be an undifferentiated connective tissue disorder. There may be other variants in that spectrum, and those are the patients that will certainly benefit from immunotherapy, whether it comes in the form of hydroxychloroquine as an immunomodulator, or whether it comes in the form of IVIG.

[20:01] Dr. Linda Bluestein: Excellent. So those patients — when you work them up and if you've identified Sjögren's — that might be somebody that you would use hydroxychloroquine in, as opposed to IVIG if they're more functional?

[20:15] Svetlana Blitshteyn, M.D: I always like to employ my colleagues in various specialties, so I would like to work with rheumatologists, and I oftentimes do. Now, however, the problem is that getting a diagnosis of Sjögren's or another autoimmune disorder is quite difficult when the standard panel of antibodies comes back as unremarkable. So it's a process — it's a process that certainly needs to be taught in residencies and fellowships for our rheumatology colleagues and also in neurology, because we need to be more aggressive with figuring out, diagnosing, and then treating.
[21:00] So certainly hydroxychloroquine is what we would typically use as a starting point for mild cases that may be working or not as impaired as our bedridden patients. But that's one option. There's also methotrexate and CellCept and many others. And it's important to identify, because what I often see is that in my patients in their 50s or 60s they present with a lot of comorbidities. Suddenly there is a lung manifestation and there is cardiac dysfunction and diastolic dysfunction and pulmonary hypertension and lymph nodes and nodules on scans, and nobody knows where that came from on the background of dysautonomia, POTS, and joint pain. Oftentimes there is an unidentified autoimmune disorder that was unmanaged. So in your 30s and 40s, maybe it was okay, and then when you become older, the inflammatory autoimmune process is unchecked and untreated, and things become worse. There is also a small percentage of lymphoma and other cancer manifestations in untreated Sjögren's syndrome. So that's a very important area that those of us who see a lot of patients with POTS need to keep in mind.

[22:29] Dr. Linda Bluestein: Very good. And in terms of other treatment options — we talked about fatigue and we talked about brain fog. Is there a time where you would use stimulants in this population?

[22:42] Svetlana Blitshteyn, M.D: Yes. Fatigue is one of the universal manifestations of dysautonomia. Some of our patients — at least 20% and probably more — actually qualify for diagnostic criteria of chronic fatigue syndrome by various types of criteria that are out there. And as I always explain, fatigue is one of the hardest symptoms to treat. We can treat heart rate, we can treat tachycardia, we can treat hypertension, we can treat hypotension, we can treat headaches and neuropathic pain, but when it comes to treating fatigue, it's very difficult, as we don't fully understand that symptom — what type of physiologic processes underlie it. Of course, it's going to be a combination of cardiovascular, cerebral, mitochondrial, and metabolic processes. But fatigue is multifactorial.
So yes, stimulants are one of the options that I use. They have to be used on an individual case-by-case basis, and I think they can be quite effective, especially in our younger patients, maybe with comorbid ADHD. Those patients who are young without hypertension, whose blood pressure is normal and who can tolerate a low dose of stimulants such as Adderall, Ritalin, Concerta, and others — that can be very effective. We also have Provigil or Nuvigil that we can utilize. But the important point to stress is that treating POTS effectively will ultimately improve generalized fatigue and can also improve brain fog. So it's very important to treat POTS effectively with medication treatment options before we jump to stimulants.

[25:57] Dr. Linda Bluestein: That makes sense. And what recommendations do you give for people who are having difficulty finding a doctor to evaluate and treat their possible POTS or other form of dysautonomia, especially for those who for financial reasons need to use their insurance rather than go to a practice that does not take insurance?

[26:18] Svetlana Blitshteyn, M.D: So this is a huge problem in the United States and most other countries. There is a significant shortage of practitioners who understand and specialize in autonomic disorders, which is why it's very important that we incorporate autonomic disorders as part of the training. And perhaps we need to start in medical school. I certainly haven't learned much, if anything, about autonomic disorders in medical school. I did learn about the autonomic nervous system as part of my physiology and biochemistry and neuroscience courses, but that's where we have to start educating medical students.
Thereafter, there are plenty of opportunities for education during residencies, including internal medicine, primary care, cardiology, neurology, and rheumatology. I think a lot of specialties will benefit from some kind of curriculum on autonomic disorders. We try to give grand rounds and lectures, and we write articles to get the word out there, because ultimately patients present to their primary care physicians. So everybody needs to be aware. Of course we don't expect primary care physicians to go through this complex interplay of symptoms and workup and therapeutic options, which is why we also need neurologists, cardiologists, rheumatologists, and gastroenterologists to be somehow trained in these disorders to improve access.
[28:02] There is the American Autonomic Society, who has done great things in promoting education. There is an Autonomic Disorders Interest Group as part of the American Academy of Neurology. There are many societies that are now running CME courses. And I have seen a palpable difference. Whereas 10 years ago there was a huge diagnostic delay and very few people knew about POTS or were able to diagnose it, now I see patients presenting to me with a diagnostic delay of maybe a year, which is a huge improvement compared to 6 or 7 years ago. And now I see my colleagues in neurology diagnosing POTS, which is great. I see them using first-line medication treatment options like midodrine, Florinef, and beta blockers. So things are certainly improving. They are much better today than they were 10 years ago.

[29:02] Dr. Linda Bluestein: Well, that's good to hear.

[29:02] Jennifer Milner: That's exactly what I was about to say. I'm going to be optimistic on that. Yes.

[29:09] Dr. Linda Bluestein: Definitely. Because it is so frustrating — I was speaking with a cardiologist not too long ago and he said, quote, "Well, POTS is very rare."

[29:21] Svetlana Blitshteyn, M.D: There are a lot of myths. Certainly some people think POTS is rare. Some physicians think that POTS is only about heart rate and blood pressure, that if you just fix heart rate and blood pressure, you should be fine. I've had many cardiologists say to patients, "How can you feel so sick? How can you be dizzy, fatigued, and having difficulty standing? You're standing now. Your heart rate is 90. Your blood pressure is 120 over 80. That's perfectly fine." But POTS is not just about heart rate and blood pressure. And POTS has much less to do with the cardiovascular system than it does with neurologic control of the autonomic reflexes.
[30:08] I think we're going to move in the direction of neuroinflammation, neurophysiology, and neurochemistry that underlie POTS and many other related disorders. Cerebral hypoperfusion is one of the key mechanisms in our patients, and interestingly, in a recent study from good researchers, patients who were put on a tilt table test and who did not have a confirmed POTS or neurocardiogenic syncope still had abnormal cerebral perfusion and complained of symptoms. So it will be interesting to see how we move away from certain accepted notions and diagnostic criteria into this new area of research, which is going to be neuroinflammation, cerebral regulation of blood flow, and so forth.

[31:12] Dr. Linda Bluestein: Excellent. And so if we have providers or physicians listening to this who have patients with POTS and want to do some initial treatment — they do the stand-up test in their office and they see that increase in heart rate of 40 beats per minute in age 19 and under, or an increase of 30 beats per minute over age 19, and they want to go ahead and start some treatment. And of course, as we discussed earlier, the sodium and the sleeping with the head of the bed elevated and those kinds of things should come first. But if that physician is willing to start with medication management, are there certain strategies you would recommend in terms of what they might start first? Are there some general guidelines?

[32:02] Svetlana Blitshteyn, M.D: Sure. So after the non-pharmacologic treatment approach — which unfortunately isn't going to be effective for quite a few patients — the first-line medication treatment options are going to be beta blockers, which slow down the heart rate and decrease sympathetic overactivity. The key there is to start on a very low dose. We also have Fludrocortisone, or Florinef, which is a first-line medication treatment option that helps the body absorb all that sodium consumed in the diet and water at the kidney level. We have Midodrine, which is an alpha-1 agonist that aids with peripheral vasoconstriction in the extremities, abdomen, and pelvis. There is also Mestinon, Ivabradine, and stimulants as I said before, and other medications to target mast cell activation syndrome, neuropathic pain, and headache control. And there is also the need to improve sleep patterns, of course, through non-medication treatment options first.

[33:05] Dr. Linda Bluestein: Excellent. And we discussed in our previous episode a little bit about autoimmunity, and I wanted to pivot a little bit to vaccination, because I know you've written about the human papillomavirus, or HPV, vaccination and some cases of POTS following HPV vaccination. And of course, vaccination is now a particularly hot topic because of the coronavirus pandemic. Could you talk a little bit about that paper that you wrote and what we should know about vaccination and the possibility of POTS or dysautonomia occurring following a vaccination?

[33:44] Svetlana Blitshteyn, M.D: So I always start this conversation with the fact that I'm pro-vaccine. I follow all of the recommended CDC guidelines for immunization, and like many others, I am eagerly awaiting a vaccine for coronavirus to gain control of this pandemic.
[34:00] So regarding POTS and HPV vaccines — as you probably know, I was the first one to report an interesting patient who presented with new onset POTS after the HPV vaccine. She was a young college student who played college sports and became incapacitated after the HPV vaccine. I subsequently reported a case series of 6 patients who presented with POTS after the HPV vaccine. So I thought I was describing an interesting case report and presentation of new onset POTS. Well, little did I know that I would find myself in the middle of all of these events that unfolded next. Countries like Denmark, Japan, Mexico, Italy, and others began reporting similar patients as I did. And suddenly I had calls from parents and patients and people working for federal court calling me to represent all of those patients in the National Vaccine Injury Compensation Program, which is part of the U.S. Department of Health and Human Services. That's how I got involved as a medical expert on some of these cases.
[35:08] I felt I had to become an advocate for these patients because they were reporting this onset and triggering event. In some large studies on POTS patients, a number of about 4 to 6% of patients reported onset of POTS after vaccination — many of them after the HPV vaccine, and some after the flu vaccine and others. So the way I describe this is that in the vast majority of cases, this does not happen. But in some patients — very rare cases perhaps — vaccination with the HPV vaccine and perhaps others may trigger adverse events. We know that they happen in cases of Guillain-Barré syndrome and others. And so similarly, in some rare patients, this may lead to new onset POTS or other autonomic disorders.
[36:19] Of course, the key is going to be personalized medicine — identify those individuals who might be at risk for these adverse events through their genotype. Interestingly, now with coronavirus, we are talking about some people who are healthy having a severe course with acute COVID resulting in ICU stay and unfortunately even death. These were young, healthy patients. I believe in a matter not dissimilar to this, there are a few patients who are young and healthy who, through their unique genetic makeup, may end up with severe adverse events. And that's important — all of us who have worked on some of the papers and research collaborations support vaccination, we believe in vaccines, and we just report adverse events in order to ensure safety. Vaccination safety is such a big topic now and always has been, and when we ensure vaccination safety, we improve compliance, because a vaccine to prevent cervical cancer is so important and necessary. We want to increase vaccination rates with the HPV vaccine in the United States and elsewhere in the world.

[37:48] Dr. Linda Bluestein: Excellent. And in terms of people who have had vaccinations — we know that some people have vaccinations and have no side effects whatsoever, and other people might have more significant flu-like symptoms. Are those maybe people who should consider being cautious, especially if it's a series — for example, if it's a 3-part vaccine — in getting the second part of that series? Or are mild-type symptoms completely unrelated?

[38:27] Svetlana Blitshteyn, M.D: None of it is known and none of it has been studied, so there are no recommendations in that regard. But we do recommend, of course, that everyone gets a flu shot. And then hopefully when we have a good, safe, and effective coronavirus vaccine, that will be a significant breakthrough and possibly the end of the pandemic.
[38:55] So right now there are no guidelines on how to identify these rare individuals who may react adversely. In the vast majority of cases, vaccines are going to be safe and necessary, with maybe some minor side effects like redness at the site of the injection or fever or something like that — and that's temporary. The kind of work that I've done was on rare cases. And interestingly enough, it led to some investigation, and we brought attention to POTS in general, because I think many countries and many physicians didn't even know what POTS was. And now suddenly POTS is included in different kinds of surveillance programs to track it as a possible adverse event.

[39:51] Dr. Linda Bluestein: So I would love to chat a little bit about post-viral dysautonomia, especially now with the coronavirus pandemic and these so-called long haulers — people who are having prolonged symptoms following coronavirus infection. What should we know about that?

[40:07] Svetlana Blitshteyn, M.D: The most common trigger of POTS is a viral infection, affecting at least 40% of our patients, and these include viruses such as influenza, Epstein-Barr virus, enterovirus, parvovirus, and others. So post-viral dysautonomia is common and is what I frequently see in my clinic.
With respect to COVID-19, when it appeared in the United States in early March, reports of some patients taking a long time to recover were already coming in from China, South Korea, and Japan. So I anticipated that post-COVID dysautonomia may be a long-term complication of that virus, just as it can be a complication from other viral infections. We also knew from the SARS outbreak in 2002 that almost 50% of patients with SARS had lingering symptoms compatible with chronic fatigue syndrome. So it's not surprising that SARS-CoV-2, a virus related to the previous SARS virus, is causing a post-viral syndrome as well.
[41:13] I have seen a number of patients with post-COVID dysautonomia, or long COVID. These patients are young people in their 20s, 30s, and 40s who were either healthy or had minor medical problems that did not affect their functional status, and now after having COVID they are experiencing severe fatigue, tachycardia, dizziness, headache, numbness, digestive symptoms, and inability to exercise. Some are unable to work at their previous jobs, even if it involves working from home. Of course, there are no specialists in long COVID yet because the long-term effects and complications of this virus haven't been studied.
[41:49] The CDC states that 35% of people who had COVID-19 did not fully recover 2 to 3 weeks after having the virus, and at least 20% of these people were between ages 18 and 34. It would be important to determine through research whether long haulers have abnormal tilt table tests and other tests of the autonomic nervous system. There is one study from Germany that, using cardiac MRI, demonstrated evidence of heart muscle inflammation in 60% of patients who had COVID 2 to 3 months prior, and almost 80% of patients had MRI findings of cardiac inflammation. In a U.S. study of athletes, almost 50% had abnormalities on cardiac MRI, and 15% had evidence of myocarditis. So these patients had mild COVID symptoms or were asymptomatic and ended up with long-term complications. We also have estimates from Mount Sinai researchers that 70,000 New Yorkers may be long haulers. So I think many physicians, including neurologists, cardiologists, and primary care physicians, will have to become familiar with these patients given their neurologic and cardiac symptoms.

[43:23] Jennifer Milner: Wow. Yeah, there's still so much more that we don't know yet, but it's great that people like you are thinking about this and looking at all of that. You are such a wealth of knowledge. We are so grateful to have you on here.
[43:40] Final question. You have talked so much about dysautonomia and given us so much to think about over these past two episodes. Where do you see the future of dysautonomia? And also, on a practical note, where can people find you?

[43:48] Svetlana Blitshteyn, M.D: The future of dysautonomia — where do I begin? I think we have made significant progress over the past 20 years. I have certainly seen progress in research, especially with identification of antibodies — adrenergic, muscarinic, and others. We have made progress with diagnosing and raising awareness among clinicians, with reduced diagnostic delay now compared to 10 years ago. But certainly progress needs to happen with effective therapies, because there is no FDA-approved medication for POTS, and everything we have is used off-label, and the efficacy of these therapies is suboptimal. They may help some patients, but certainly they do not result in recovery or significant improvement.
[44:57] We just had a study out of Italy that noticed improved symptoms over the course of 2 years, but no significant improvement in functional status where patients were able to resume full-time employment or make significant progress. So as with a lot of neurologic disorders — and I consider POTS to be one of the neurologic disorders — we need effective therapies.

[45:30] Jennifer Milner: Excellent. So where can people find you on the internet if they want to read more about you or try to get in touch with you?

[45:38] Svetlana Blitshteyn, M.D: I am the director and founder of Dysautonomia Clinic, where I see patients who are adults and teenagers with all types of dysautonomia. I also have other providers who are very familiar with patients with dysautonomia and are very important in the comprehensive care that we offer. We have a clinical psychologist who is a PhD psychologist and works with my patients. We have a nutritionist who helps our patients with diet and nutritional requirements, and we have a rehabilitation physician who works with our patients to improve their functional capacity and is also a wellness coach. And we have researchers who help us with our research studies. So dysautonomiaclinic.com is where you can find us, and you can email with consult requests for care.

[46:48] Jennifer Milner: And we will have that in the show notes as well. We will have the contact information down in the notes for the podcast.

[46:56] Dr. Linda Bluestein: So I wanted to ask — what kind of patients would have access to be able to see you?

[47:00] Svetlana Blitshteyn, M.D: We offer consults to patients all over the United States and other countries as a consulting service. We work closely with your local physicians to implement these recommendations and treatment options. This is for our patients who are out of state. It is a consulting service that we offer, but you do need your local physicians, who can become part of the treating team, to help you get better.

[47:34] Jennifer Milner: Excellent, thank you. Well, you have been listening to Bendy Bodies with the Hypermobility MD. Today we've been speaking with Dr. Svetlana Blitshteyn, board-certified neurologist and director of the Dysautonomia Clinic. Dr. Blitshteyn, thank you so much for taking the time to come on the Bendy Bodies Podcast and sharing your expertise with us today.

[47:55] Dr. Linda Bluestein: Thank you so much. It was great chatting with you.
[47:59] Thank you for joining us for this episode of Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other artistic athletes. Please leave us a review on your favorite podcast player. Remember to subscribe so you won't miss future episodes. Be sure to subscribe to the Bendy Bodies YouTube channel as well. Thank you for helping us spread the word about hypermobility and associated conditions. Visit our website at www.bendybodies.org for more information.
[48:31] For a limited time, you could win an autographed copy of the popular textbook Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders just by sharing what you love about the Bendy Bodies Podcast. On Instagram, tag us @bendy_bodies, and on Facebook at Bendy Bodies Podcast.
[48:46] The thoughts and opinions expressed on this podcast are solely of the co-hosts and their guests. They do not necessarily represent the views and opinions of any organization. The thoughts and opinions do not constitute medical advice and should not be used in any legal capacity whatsoever. This podcast is intended for general education only and does not constitute medical advice. Your own individual situation may vary. Do not make any changes without first seeking your own individual care from your physician. We'll catch you next time on the Bendy Bodies Podcast.