22. Managing Dysautonomia with Svetlana Blitshteyn, M.D.

Episodes have been transcribed to improve the accessibility of this information. Our best attempts have been made to ensure accuracy,  however, if you discover a possible error please notify us at info@bendybodies.org

00:00:00 

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 today. We have the great pleasure of speaking with Dr. Svetlana  Blitsheyn, 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.  Blitsheyn completed her neurology training at Mayo clinic graduate school of medicine. As 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.  

00:01:07 

Jennifer Milner 

Dr. Blitsheyn has been an invited speaker at national and international conferences, including at the world health  organization. Dr. Blitsheyn has been the principal investigator on a number of important research studies  concerning POTS and auto-immunity, 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 us news and world report Medscape neurology today,  new scientists and others. 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, US human health award, the American Academy of neurology student prize.  

00:02:13 

Jennifer Milner 

In our last episode, we broke down the whole umbrella term, dysautonomia and talked about POTS specifically,  also looking at small fiber neuropathy, breaking down a Chiari malformation, kind of digging into what is under  that umbrella with dysautonomia, going into POTS, going into how people can get a diagnosis of it. We wanted  to go 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  diets, with over the counter medications and or environmental changes? What would you suggest? 

00:03:00 

Dr. Svetlana Blitsheyn 

The mainstream therapy consists of non-pharmacologic approach, which we always employ. We ask our  patients to increase their fluid intake to at least two 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. There are quite a few out there. We advise them to try wearing compression  stockings and abdominal binders to cause external as a constriction and get blood back up from the lower body  to the heart and the brain. We also recommend sleeping at the incline of about four to six inches, which may  help the body conserve sodium and water at night. We ask patients to eat small frequent meals low in  carbohydrates. Exercise is an important management strategy, which is not without controversy.  

00:04:04 

Dr. Svetlana Blitsheyn 

First, as I mentioned before, exercise intolerance is one of the hallmarks of POTS, but exercise is also necessary  in order to prevent secondary to conditioning. There is still some prevailing belief amongst some of my  colleagues that parts 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. Ultimately we recommend an exercise program that diminishes the effects of gravity and  allows the patient to exercise while sitting or laying down using recumbent bike rowing machine or swimming  in the pool has been the most effective exercise that our patients can tolerate. The key is start low and go slow to  build up the exercise capacity to at least 30 minutes of exercise for four to five times a week. Now,  unfortunately in many patients that come to me, which tend to be the sicker patients, medications are going to be  necessary to control the symptoms and allow the patients to start exercising in the first place.  

00:05:25 

Dr. Linda Bluestein 

Very good. When you were mentioning about like sodium chloride and or electrolytes, do you have any more  specific recommendations in terms of, I know there's like 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, right? So, and some contain sugars and container of artificial  sweeteners. Do you have any additional kind of details since that's something that people on own might make  better or less good choices. Do you have any additional insights into that?  

00:06:06 

Dr. Svetlana Blitsheyn 

Very important question. 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. As long as you consume at least five to seven grams for a young patient, and 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. That can be through whatever sources you tolerate. Some patients like to drink Gatorade; fine with me. 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 the coating that prevents their dissolving, many brands that are  available. I have no stock in any of them. 

00:07:26 

Dr. Svetlana Blitsheyn 

Some people are not able tolerate salt tablets in any form. At that time I say, take a, just simple salt from a salt  shaker, add that to your water, add some lemon and some cucumber and drink this throughout the day. That way  you end up consuming both fluids and salt. That's the bottom line, easy, you're welcome to salt your food. Of  course salty snacks can be a very good way to boost your oral load of sodium and water. You can pick pretzels  or nuts or olives, whatever you can tolerate. Some of our patients have allergies and sensitivities, which is why  I'm very liberal. And, which is why I say whatever you can tolerate to get that amount in. That's fine with me,  for our sickest patients with severe gastro-paresis or severe swallowing of that is a big problem. They're unable  to consume enough fluids and salt, and that makes it very difficult, which is partly why their POTS can be out of  control. 

00:08:50 

Dr. Svetlana Blitsheyn 

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, as 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 the patient was 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 the IVC. That  typically helps them to feel better. A special consideration should be given to our patients with Ehlers-Danlos  and dysautonomia who have severe dysphasia or swallowing dysfunction or severe gastroparesis, where they are  unable to consume that much fluids and salt.  

00:10:09 

Dr. Svetlana Blitsheyn 

We have to be cognizant of that and make special arrangements for these patients, but then the vast majority try  to utilize them only on as needed basis and try to consume all of your fluids and salt orally.  

00:10:24 

Dr. Linda Bluestein 

That sounds good. I'm really glad that you brought up about the saline infusions, because that definitely is a very  important topic to address. 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, and that a lot of these people with if they have headaches. Do you have any thoughts about  that?  

00:10:49 

Dr. Svetlana Blitsheyn 

Again, everything needs to be individualized. If you have a patient with POTS and chronic migraines that  they're 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 by me. I think at the end of the day, to me as the clinician, it's more  important that this amount of sodium chloride and the amount of fluids are in your body on a daily basis, then  the sources of course one can argue, well, there are healthier sources and less healthy, in this patient population,  especially those with the significant allergy sensitive, it's this or gastro-paresis or abdominal pain, whatever you  can find to get you there to your daily recommended allowance of sodium chloride and fluids, that would be fine  with me.  

00:11:54 

Jennifer Milner 

Okay, excellent. Thank you. I love hearing the overall theme that it depends on the patient and that it should be  individualized and that we, 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. 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. In this population,  how common are sleep problems and, what can be done about them?  

00:12:36 

Dr. Svetlana Blitsheyn 

That's a very good question. If you look clinically and ask patients, a vast majority will say that they  experienced significant sleep disturbance, whether it's insomnia, difficulty falling asleep, difficulty staying  asleep or both. 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. What that tells us, of course, as a lot of things in medicine and neurology, it can be hard to  objectively catch, these manifestations. When we talk about the Ehlers Danlos population there, we have more  evidence that there is the 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. 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. 

00:13:57 

Dr. Svetlana Blitsheyn 

When there is significant sleep disturbance, I always make it the 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 four to five hours every night, you cannot get better. If you have untreated and undiagnosed sleep  apnea, this simple example, this happened here. Today, I had a young patient with 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, she's not particularly overweight, but that's what we suspect when, our patients state that they sleep nine,  10 hours every night, then they take a nap lasting four to five hours, and they're still very tired. Lo and behold, I  sent her for a sleep study, which returned with very abnormal findings of severe obstructive sleep apnea.  I think that's an area that needs to be emphasized, when you are evaluating patients with both POTS and Ehlers Danlos syndrome.  

00:15:18 

Dr. Linda Bluestein 

Thank you. We know that fatigue and sleep definitely go hand in hand. You had mentioned in our earlier  episode, some of the common comorbid symptoms like fatigue, headache, some of the comorbid conditions like  small fiber neuropathy. Can you talk about why these are important to address and what types of strategies you  might use in treating those?  

00:15:41 

Dr. Svetlana Blitsheyn 

So, as I mentioned, patients with POTS present with multiple comorbidity, at least 80% of patients with POTS report, at least one co-morbid condition, the symptom burden in our patients is very high. When you address  these comorbidities, you improve symptom burden, and therefore your improve overall, health overall  wellbeing, and hopefully the functional status. How do we do it? Well, first of all, we have to identify those. Co morbidities diagnose them correctly. If they are unidentified, they're not going to be treated properly. Was the  example of my patient with severe sleep apnea that I use. It's very important to look for them. Don't assume that  because you have a young teenage girl who appears to sleep nine, 10 hours that there is no sleep disorder, send  them out for a sleep study. That's very important. Similarly, we say the GI symptoms are very common in  patients with POTS.  

00:16:55 

Dr. Svetlana Blitsheyn 

Don't assume that this is part of GI symptomatology, and you should just ignore it, get a gastric emptying test,  identify whether they have gastro-paresis, do check them for mast cell activation syndrome, identify whether  they have that co-morbid condition as well. Because very commonly, if you identify a mast cell activation  syndrome and you treat it appropriately with diet and medications, patients improve, and interestingly enough,  even orthostatic intolerance symptoms may improve when you identify these underlying conditions. Similarly  with autoimmune disorders, I need to talk about that because time and time again, I have patients are young  women in their thirties, forties and fifties, who come to me with severe dysautonomia, low blood pressure,  severe POTS, joint pain, all kinds of other underlying issues, maybe positive autoimmune markers. Maybe they  have some dryness, maybe it's dry eyes, maybe it's dry mouth, which, dry mouth is very common in our patients  to begin with.  

00:18:15 

Dr. Svetlana Blitsheyn 

They come to me and their Sjogren's antibodies are negative. Their doctors are confident that they have ruled  out Sjogren's syndrome. This is not the case. What we know is that Sjogren's is the second most common cause  of what the immune neuropathy and often presents with small fiber neuropathy and dysautonomia, and at least  40% of the patients with Sjogren's have negative antibodies, especially if they present with neurologic  symptoms. Send them for a minor salivary gland biopsy. I have diagnosed some of my patients with severe  dysautonomia with Sjogren's syndrome.  

00:19:21 

Dr. Svetlana Blitsheyn 

If it's not Sjogren's syndrome, there may be an undifferentiated connective tissue disorder. There may be other variants in that spectrum. 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.  

00:19:50 

Dr. Linda Bluestein 

Excellent. Those patients, when you work them up and if you've identified, Sjogren's, that might be somebody  that you would use hydroxychloroquine, or if they're more functional, as opposed to IVIG. 

00:20:03 

Dr. Svetlana Blitsheyn 

I always like to employ my colleagues in various specialties. I would like to work with rheumatologists, and I  oftentimes do now, however, the problem there is, that getting a diagnosis of Sjogren's or another autoimmune  disorder is quite difficult when the standard panel of antibodies come back as unremarkable. 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 with diagnosing and then with treatments,  certainly hydroxychloroquine is what we would typically use as a starting point for mild cases that may be  working, or maybe not as impaired as our bedridden patients, but that's one option. There's also a methotrexate  and CellCept and many others. It's important to identify because what I often see is that in my patients, in their  fifties or sixties, they present with a lot of comorbidities.  

00:21:21 

Dr. Svetlana Blitsheyn 

Suddenly there is cardiac dysfunction, and there is diastolic dysfunction and pulmonary hypertension and lymph  nodes and nodules on scans. 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. In your thirties  and forties, maybe it was okay. When you become older, the inflammatory autoimmune process is unchecked  and untreated and things become worse. There's also a small, a percentage of, lymphoma and other, cancer  manifestations in untreated Sjogren's syndrome. That's a very important area that those of us who see a lot of  patients who have POTS need to keep in mind.  

00:22:17 

Dr. Linda Bluestein 

Very good. 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 at all in this population?  

00:22:30 

Dr. Svetlana Blitsheyn 

Yes. Fatigue is one of the universal manifestations of the dysautonomia. Some of our patients, at least 20% and  probably more actually qualify for a diagnostic criteria of chronic fatigue syndrome, by various type of criteria  that are all there. As they always explained, fatigue is one of the hardest treatment to treat fatigue is one of the  

hardest symptom 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 a don't understand that symptom as the concept, and what type of physiologic processes  underlying, of course it's going to be a combination of cardiovascular and the cerebral and mitochondrial and  metabolic, processes, but, fatigue is multifactorial. So, yes, stimulants can be used, they have to be used also on  an individual case by case basis.  

00:23:52 

Dr. Svetlana Blitsheyn 

And, I think they can be quite effective, especially in our younger patients, maybe with comorbid ADHD, but  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 they think it's important point to stress is that treatment of POTS effectively will ultimately improve generalized fatigue and can also improve brain fog. It's very important to  treat POTS effectively with medications, treatment options for POTS before we jumped to stimulants.  

00:24:45 

Dr. Linda Bluestein 

Makes sense. 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 that for financial  reasons, need to use their insurance rather than, go to a practice that does not take insurance.  

00:25:05 

Dr. Svetlana Blitsheyn 

This is a huge problem in the United States and most other countries, there is significant shortage of  practitioners who understand and specialize and in autonomic disorders, which is why it's very important that  we incorporate autonomic disorders as part of the training. Perhaps we need to start in medical school. I  certainly haven't learned much if anything, about autonomic disorders in medical school. I didn't learn about the  autonomic nervous system as part of my physiology and biochemistry and neuroscience scores, but that's where  we have to start educating medical students thereafter. 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 to lectures and  we write articles to get the word out there because ultimately a patient present to their primary care physicians.  

00:26:18 

Dr. Svetlana Blitsheyn 

Everybody needs to be aware of not, 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. There is 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 they're now using this and running CME courses. I have seen palpable difference, whereas, 10 years ago,  there was a huge diagnostic delay and very few people knew a path or were able to diagnose it. Now I see  people who patients presenting to me, with the diagnostic delays is maybe a year, which is great, which is a  huge improvement compared to six and seven years as, and now I see physicians, I see my colleagues in  neurology diagnosing POTS, which is great.  

00:27:35 

Dr. Svetlana Blitsheyn 

I see them use first-line medication treatment options like midodrine, florinef and beta blockers. So I think  things are certainly improving. They are much better today than they were 10 years ago.  

00:27:49 

Dr. Linda Bluestein 

Well, that, well, that's good to hear that's exactly what I was wanting to say.  

00:27:56 

Dr. Linda Bluestein 

Yes, definitely. It, because it is so frustrating talking to, I know I was speaking with a cardiologist not too long  ago, and he said, quote, well, POTS is very rare.  

00:28:08 

Dr. Svetlana Blitsheyn 

So there are a lot of myths. Certainly it's not, some people think POTS is rare. Some physicians think that the  POTS is only about heart rate and blood pressure, that if you just fixed heart rate and blood pressure, you should  be fine. I've had many cardiologists relate to patients. How can you feel so sick? Your blood pressure is 120  over 80. That's perfectly fine because POTS is not just about heart rate and blood pressure. POTS is much less  to do with cardiovascular system than it is with neurologic control of the autonomic reflexes. I think we're going  to move in the direction of, neuro inflammation, neurophysiology, neurochemistry, that underly POTS and many other related disorders. Cerebral hypoperfusion is one of the key mechanisms in our patients. Interestingly  enough, in the recent study, from good researchers, those patients who were put on a tilt table test and who did  not display, who did not have a confirmed POTS or neurogenic syncope, they still had abnormal cerebral  perfusion replaying the symptoms. It will be interesting to see how we move away from certain accepted notions  and diagnostic criteria into the new area of research, which is going to be, neuro inflammation, cerebral  regulation of blood flow and so forth. 

00:29:59 

Dr. Linda Bluestein 

Excellent. If we have, providers, physicians listening to this and, other prescribers who have patients with POTS and they want to, at least do some initial treatment with them, they do the standup test in their office. They do  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. They want to go ahead and start some treatment. Of course, as you, as we discussed earlier about  the sodium and those kinds of other, sleeping with the head of the bed elevated, and those kinds of things we  should do first, but if that physician is willing to start with the medication management, are there certain  strategies that you would recommend in terms of what they might start first? And of course we know that there  are individual variations, but just as a, some general guidelines.  

00:30:49 

Dr. Svetlana Blitsheyn 

Sure. After 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 beta blockers that slow down the heart rate  and decrease sympathetic overactivity. The key there is to start on a low dose on a very low dose. We also have  fludrocortisone, which is a first-line medication treatment option that helps the body to absorb all that sodium  consumed in the diet and water at the kidney level. We have midodrine, which is an alpha one agonist that aids  with peripheral vasoconstriction and pulling in the extremities, abdomen and pelvis. There also Mestinon, ivabradine and stimulants, as I said before, and other medications to target mast cell activation syndrome,  neuropathic pain, and had the control, and there's also the need to improve sleep patterns of course, through non medication treatment options.  

00:31:53 

Dr. Linda Bluestein 

Excellent. We discussed in our previous episode, about autoimmunity and I just wanted to pivot to vaccination  because I know you've written about, the, human papillomavirus or HPV vaccination and some cases, of POTS following HPV vaccination. Of course, vaccination we know is now a particularly hot topic because of, the  coronavirus pandemic. Could you talk about, that paper that you wrote and what we should know about  vaccination and the possibility of POTS, or dysautonomia occurring following a vaccination?  

00:32:32 

Dr. Svetlana Blitsheyn 

I always start this conversation was the fact that I'm, pro-vaccine, I follow all of the recommended guidelines for  immunization and like many others. I am eagerly awaiting a vaccine for coronavirus to gain control of this  pandemic. Regarding POTS and HPV vaccines, as you probably know, I was the first one to report an  interesting patient that presented with new onset after HPV vaccine. She was a young college student who  played college sports and became incapacitated after HPV vaccine. I subsequently reported a case series of six  patients who presented with POTS after HPV vaccine. I thought I was describing an interesting case report and  presentation of nuance the POTS. Well little did I know that I would find myself in the middle of all of these  events that unfold, but next, so countries like Denmark, Japan, Mexico, Italy, and others, began reporting similar  patients as I did.  

00:33:36 

Dr. Svetlana Blitsheyn 

And, suddenly I had calls from parents and patients and the people working for federal court calling me to  represent all of those patients in the national vaccine injury compensation program, which was, part of the US  department of health and human services. That's how I got involved to be a medical expert. On some of these  cases, I felt I had to become an advocate for these patients because they were reporting could this onset than a  triggering event in some of the studies, large studies, on POTS patients, a number of about 4 to 6% of patients,  report that onset the POTS after vaccination, many of them after HPV vaccine and many in some of them after  flu vaccine and others. The way I described this is of course in the vast majority of cases, this does not happen,  but in some patients, very rare cases, perhaps, vaccination with either HPV vaccine and perhaps others may  trigger adverse events. I think similarly, in some rare patients, this may lead to a new onset POTS or other  autonomic disorders. 

00:34:51 

Dr. Svetlana Blitsheyn 

Of course the key is going to be personalized medicine, identify those individuals who might be a true risk for  these adverse events through their genotype. Yeah. Interestingly now, with Coronavirus, we are talking about  some people who are healthy, having the severe course with acute COVID resulting in ICU stay, and  unfortunately, even death. And 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, maybe unique genetic makeup may end  up with severe adverse events. That's important, all of us who have worked, on some of the papers and research  collaborations, we 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.  

00:36:15 

Dr. Svetlana Blitsheyn 

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 HPV vaccine in the United States and  elsewhere in the world.  

00:36:36 

Dr. Linda Bluestein 

Excellent. In terms of people who have had, we know that some people have vaccinations and have no side  effects whatsoever, and other people have vaccinations and might have some, like more significant like flu, like  symptoms than other people might have, or those maybe people that may want to consider, especially if it's like  a series. If it's a three part vaccine, for example, would that maybe indicate that they should be cautious in and  maybe getting the second part of that series or is that completely unrelated, any more mild type symptoms?  

00:37:14 

Dr. Svetlana Blitsheyn 

None of it is known and none of it has been studied. There are no recommendations, in that regard. We do  recommend of course, that everyone gets a flu shot now and in the past. Hopefully when we have a good, safe  and effective coronavirus vaccine, that will be, a significant breakthrough and possibly, the end of the pandemic.  Right now there are no guidelines how to identify these rare individuals who may react adversely in the vast  majority of cases, vaccines are going to be safe and necessary. I was maybe some minor side effects like redness  of the site of infection or fever or something like that. That's temporary. That's important to understand, that, the  kind of work that I've done was on rare cases and interestingly enough, it led to some investigation and, we  brought attention. We also brought attention to parts in general because I think many countries, many physicians  didn't even know what the POTS was.  

00:38:27 

Dr. Svetlana Blitsheyn 

Now suddenly POTS is included in different kinds of surveillance programs to track this as a possible adverse  event.  

00:38:38 

Dr. Linda Bluestein 

I would love to chat about post viral dysautonomia, especially now with the coronavirus pandemic and these  quote unquote long haulers that people that are having prolonged symptoms, following coronavirus infection.  What should we know about that?  

00:38:55 

Dr. Svetlana Blitsheyn 

The most common trigger of POTS is a viral infection affecting at least 40% of our patients. These includes  viruses such as influenza Epstein-Barr virus, intra virus, parvovirus, and others. Post viral dysautonomia is  common. What they frequently see in my clinic is respect to COVID-19 when that 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. We also knew from the SARS outbreak in 2002, that almost 50% of patients with SARS had  lingering symptoms compatible with chronic fatigue syndrome. It's not surprising that SARS COV-2, a virus  related to the previous SARS virus is causing a post viral syndrome as well. 

00:40:00 

Dr. Svetlana Blitsheyn 

I have seen a number of patients with post COVID dysautonomia or long COVID. These patients are young  people in their twenties, thirties, and forties who were either healthy or had minor medical problems that did not  affect their functional status. Now after having COVID, they are experiencing severe fatigue, dizziness,  headache, numbness, digestive symptoms, and inability to exercise. Some are unable to work at their previous  jobs. Even if it involves work 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. The CDC States that 35% of people who  have COVID-19 did not fully recover two to three weeks after having the virus. 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 tasks and other tests of the autonomic nervous system.  

00:41:06 

Dr. Svetlana Blitsheyn 

There is one study from Germany that using cardiac MRI demonstrated evidence of heart muscle inflammation  in 60% of patients with, who had COVID two to three months prior, and almost 80% of patients had MRI  findings of cardiac inflammation in the US study of athletes. Almost 50% had abnormalities, cardiac MRI, and  15% had evidence of myocarditus. These patients had mild COVID symptoms or were asymptomatic and the  doubt with, long-term complications. We also have, estimates from Mount Sinai researchers that 7,000 of New  Yorkers maybe long haulers. I think many physicians, including neurologists cardiologists and primary care  physicians would have to become familiar with these patients, given their neurologic and cardiac symptoms.  

00:42:11 

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.  Absolutely. Absolutely. 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.  

00:42:42 

Dr. Svetlana Blitsheyn 

The future of the dysautonomia? Well, where do I begin? I think we have made significant progress over the  past 20 years. I have certainly seen a progress in research, just specially 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 therapists because there is no FDA approved medication for POTS and everything we have is  used off label. The efficacy of these therapists is suboptimal. They may have, they may help some, but certainly  they do not, resolve in a recovery or significant improvement. We just have the stats out of Italy that had noticed  improved, symptoms over the course of two years, but, no significant improvement in functional status where  the patients were able to resume full-time employment or make significant progress.  

00:44:06 

Dr. Svetlana Blitsheyn 

So, as was a lot of the neurologic disorders and I consider POTS to be one of the neurological disorders, we  need effective therapists.  

00:44:18 

Jennifer Milner 

Excellent. Where can people find you on the internet? if they want to read more about you, try to get in touch  with you. 

00:44:26 

Dr. Svetlana Blitsheyn 

The director and founder of the dysautonomia clinic, where I, 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 comprehensive care that we offer to our patients. We have a clinical psychologist who is a  PhD psychologist who works with my patients. We have a nutritionist who helps our patients with diet and nutritional requirements. We have a rehabilitation physician who works with their patients who improve their  functional capacity. And she's also the wellness coach. We have researchers who help us with our research  studies. dysautonomiaclinic.com is where you can find this and you can email with consult requests for care.  

00:45:35 

Jennifer Milner 

Excellent. We will have that in the notes as well. For the, for the show, we will have the contact information  down in the notes for the podcast. I wanted to ask what kind of patients would have access to it.  

00:45:47 

Dr. Svetlana Blitsheyn 

We offer consults to patients, all over the United States and other countries as consulting services. We work  closely with your local physicians, to implement these recommendations in treatment options. This is, was our  patients who are out the States. This is consulting service that we offer. You do need your local physicians who  can become a part of the treating team to help you get better.  

00:46:21 

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 Blitsheyn board certified neurologist and director of the dysautonomia clinic.  Dr. Svetlana Blitsheyn, thank you so much for taking the time to come on the bendy bodies podcast and sharing  your expertise with us today. Thank you.  

00:46:43 

Dr. Linda Bluestein 

So much. It was great chatting with you. Yes, yes. Thank you. Thank you for joining us for this episode of  bendy bodies with 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 at associated conditions. Visit our website,  www.bendybodies.org. For more information, for a limited time, you could win autographed copy of the  popular textbook disjointed navigating the diagnosis and management of hyper mobile Ehlers syndrome and  hypermobility spectrum disorders just by sharing what you love about the bendy bodies podcast on Instagram,  tag us at bendy underscore bodies and on Facebook at bendy bodies podcast. The thoughts and opinions  expressed on this podcast are solely of the co-hosts and their guests.  

00:47:50 

Dr. Linda Bluestein 

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.