(00:00:12):
Good evening. My friends today is Wednesday, September 16th, my distinguished world, famous world Reno and guests. This evening is dr. [inaudible]. Blitzstein. Dr. Blitzstein is a neurologist specializing in autonomic nervous system disorders. Mild job. She is the director and founder of the dysautonomia clinic. She also serves as the clinical assistant professor of neurology at the university of Buffalo Jacobs school of medicine and biomedical sciences. Dr. Blitzstein Khan completed her neurology training at the Mayo clinic, graduate school of medicine, and received her MD from the university of Buffalo school university at Buffalo school of medicine, where she received numerous awards for academic achievement. She graduated from the university of Buffalo honors college with a bachelor of science and biochemistry Summa comb. Loudy where she was the valedictorian of her graduating class. And if I were going to play some money on who the smartest person on this call is my bets on dr. Blitzstein. Welcome to the show, dr. Blitzstein. Thank you so much for being here.
(00:01:21):
Thank you for the vote of confidence. Absolutely, absolutely.
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So our team here tonight is many, many COVID long haulers and we, you know, as you know, we have this sort of mixed bag of symptoms. And what I would love is if you could start us off by talking a little bit about what your experience and observations have been so far with respect to COVID-19.
(00:01:48):
Okay, so thank you for inviting me this evening to speak on dysautonomia and how it relates to COVID-19. I’m a neurologist who specializes in autonomic disorders. The autonomic nervous system is the part of your nervous system that controls important function in the body like blood pressure, heart rate, digestion, urination, and blood flow. The autonomic nervous system is essential to the health and disease. It’s how we adapt to external environment, how we maintain a state of balance under various conditions in the environment and how we process any type of physical or psychological stress. When the autonomic nervous system of functions, a person can develop a number of symptoms and signs that result in a disorder. There are many autonomic disorders out there. I mean, thick textbooks have been written on the topic of autonomic disorders. Some of which are common and some are rare, but we will concentrate today on the most common ones like postural orthostatic syndrome, neurocardiogenic syncope or NCS an orthostatic hypotension.
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So how this, all of this relates to COVID well, the most common trigger bots is a viral infection, which includes viruses like influenza Epstein, BARR virus enter a virus, part of a virus and all others. So post viral dysautonomia is actually quite common and what they frequently see in my clinic with respect to COVID-19 one that the period in the United States in early March, the reports of some patients taking a long time to recover were coming in from China, South Korea and Japan. So I have anticipated that postcode dysautonomia may be a longterm complication of that virus, just like it can be a complication from other viral infections. We also knew from SARS outbreak in 2002, that almost 50% of patients with Sarus had lingering symptoms compatible with chronic fatigue syndrome. So it’s not surprising at all that source code to work around the virus. A virus related to previous SARS virus is causing a post viral syndrome as well.
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So I have seen a number of patients with postcode with discipline Nomia or long COBIT. These patients that I had, their young people in their twenties, thirties, and forties, who were either healthy or had minor medical problems that didn’t affect their functional status in the past. And now after having COVID 19, they’re experiencing severe fatigue, tachycardia, shortness of breath, dizziness, headaches, numbness, digestive system, and symptoms, and inability to exercise. Or we turn to work. Some are able to work at their previous jobs. Some have to go court time and some are unable to work at all, even from home. So right now there are no specialists in lung COVID. I know everyone wants to see that elusive list, but none of us are because longterm effects and complications of this virus haven’t been studied yet. We’re all learning. The CDC says that 35% of patients who had COVID-19 did not fully recover two to three weeks after having the virus.
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And at least 20% of these were young people, young people who were supposed to be well on their feet in a couple of weeks. So it would be important to determine through research whether long Kohler’s have abnormal tilt table test, which is what we’re going to discuss today. And other tests of the autonomic nervous system. I need to mention it now. And we’ll probably mention later that there is one study from Germany that used CoreLogic MRI on, on, on patients with postcode symptoms. And there was evidence of heart muscle inflammation, or my carditis in 60% of patients who had that like two, three months before and almost 80% had abnormal MRI findings consistent with some type of cardiac inflammation. And we also just recently had the study from the United States. The study was of athletes in Ohio, almost 50% of these patients had abnormal cardiac MRI, and 15% had evidence of my cardiac arrest for heart muscle inflammation.
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And these patients had mild symptoms. And the two patients who had mild carditis had actually no co acute COBIT symptoms were asymptomatic. And so we have this, you know, very puzzling, intriguing, unusual presentation from this virus that can cause anything from severe acute illness with people being in the hospital on ventilators to being actually very asymptomatic yet still resulting in serious complications, long term. And now we have researchers from Mount Sinai saying that they estimate that approximately 70,000 of new Yorkers, maybe long holder. So that’s two large number. And I think many physicians, including neurologists and cardiologists and primary care physicians will have to become very familiar with these patients and would have to become very familiar with dysautonomia in general so that they can probably go through proper diagnostic and treatment decision making, of course, an important step in this diagnostic process is going to be to stop labeling these patients with anxiety, depression, or stress, and instead, you know, to do the proper diagnostic workup for these post-viral conditions. So I’ll stop now just so that we can go further and kind of talk about more distinctly about certain things.
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So when we talk about dysautonomia, is that an umbrella term or are we taught? Is that a diagnosis? Because a lot of people are kind of saying, okay, this is attributed to dysautonomia, but if we look around this Hollywood squares of 50 people, dysautonomia seems to show itself differently in each person.
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Sure. So this is the Nomia, it simply means abnormal autonomic nervous system. And it’s with autonomic dysfunction of any kind, it’s not a diagnosis and it’s simply a descriptive term kind of like we say, headache. But we don’t specify because the term headache doesn’t specify, what type of headache, why you having a headache? Is it the brain tumor headache, or is it the migraine headache or is it the meningitis kind of headache? So I’d like to mention is very important when we say dysautonomia and autonomic nervous system, that we understand that we’re talking about the three parts of it, sympathetic parasympathetic and interrogate nervous system. And each of these three systems can malfunction resulting in specific syndromes and disorders.
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You mind just taking a moment to just talk about each one and what it does. So sympathetic, parasympathetic and intera.
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Oh, sure. So, you know, the entire autonomic nervous system is your output system. What does that mean? Well, the inputs, the sensations, everything, we, you know, feel a thing even, or experience externally in the environment need to be processed by the nervous system, by the peripheral nervous system up to the central, the central SIM simply means brain and the spinal cord and the peripheral nervous system is all of the nerve roots and nerves and a very complex network of of peripheral, nervous system that we have. And then what the Nomics nervous system is an integral part. It consists of central autonomic networks. They’re in the brain, they’re in the brain STEM they’re modulated by the hypothalamus and make the law parts of the brain. Insular cortex. Things are quite complex there. And then from down the messages to the, to the body are transmitted through the spinal cord and they come out through the peripheral nervous system, the autonomic nerves, probably the most famous nerve that you guys have heard about is the Vegas nerve, right?
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That’s the one that everyone heard about. And it’s, it is a very important part of the parasympathetic nervous system because it controls the output information to where everything, heart lungs digestive system, bladder, everything. And then we have the parasympathetic nervous system that is coming out from the spinal column out to the ganglion, out to the sympathetic chains. And that controls all of the bugs that we found. You know, your pupil will resize your, your heart rate, your blood pressure, digestion, urination everything is controlled by these two systems. And then Tara is in your digestive system. So you can see how, you know, all three parts are important in disciplined Nomia, but in what we’re going to talk about today, the post viral types or pots in York region, syncope and orthostatic hypotension, it appears that there is a sympathetic overactivity and parasympathetic sort of imbalance in parts. That’s very important sympathetic overactivity. What does that mean? It means that the sympathetic nervous system, for some reason is over in overdrive. And that creates imbalance because the body likes to be in the balance, parasympathetic with sympathetic was in Paris. But there is a constant activation of the sympathetic nervous system, which creates all of these you know, all of these problematic symptoms.
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Can you hear me okay? I think, I think people can hear me. Okay. So the sympathetic overactivity, this overactive sympathetic nervous system creates these very bothersome symptoms. Your heart rate is up, right? Your blood pressure may be up, but could be down. Okay. Is that better? Yes. Okay. So I left office as this sympathetic overactivity creates these symptoms. You know, your heart rate is up, your blood pressure is likely out, but could also be low. Your respiration may be up. It feels like anxiety, except that you, a lot of the times patients would say, I don’t feel anxious at all. I was just watching TV. I was just sitting in my room. I was just standing quietly. And then the symptoms just go sympathetic overactivity, you feel hot. You feel sweaty. Maybe you want to go to the bathroom. Maybe you want to urinate. Maybe you, there is a bowel movement that kind of hyper, hyper activation of the system. So that’s part of the symptomatology, of course.
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And you know, here’s a question that I often wonder about. So I see things like I’ll watch a patient and I’ll see their heart rate cycle from 80 to 90, up to one 40, and then back down to one 20 and 80 and sometimes into the fifties. My question is, is this something that’s although very uncomfortable? Is it something dangerous and potentially for somebody? So how worried do we have to be about that?
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Okay. So the first thing, of course, when we have a patient, like what you’re describing you watch their heart rate goes up. Is it, is it going up? You ask yourself, is this horse trait in elevation happening when they stand up just with the same simple act of standing. And if yes, then we have evidence. We have preliminary evidence of orthostatic tachycardia. That’s abnormal. Like normally what happens when you’re stand up and about almost a half, a liter of your blood goes down to your lower body, your legs, your pelvis, you start to pull normally the mechanisms that are in place who give this blood blood back up to the heart and to the brain. And that’s very quick responses from the barrier reef, Alexis from the vascular system, everything bays a constraint, the heart, the heart receives enough blood back and distributes it to the brain that’s normal.
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And the heart rate elevation normally is about 10 to 15 beats per minute. And it stabilizes the blood pressure. The patient feels no symptoms, and they’re just standing there like they’re not doing much. You don’t think about these things because the autonomic nervous system is an automatic nervous system. You don’t have to think about it. It’ll just happen. Normally as part of the body in, in pots patients, this does not happen. The mechanisms are faulty. And so when you stand up with spots, blood will go down. The mechanisms will kick in, but in order to keep that brain profusion or blood flow to the brain going, the heart rate will go up excessively by at least 30 beats per minute is the definition or one of the objective criteria of thoughts. So now you’re standing there. Your heart is racing. Like you said, it’s one 40 that’s permitted.
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Now in some cases there are patients who would we be aware that that’s happening in some cases, but in most cases, of course, if your heart rate is one 40 standing, that’s the definition for sinus tachycardia. You will feel this activation, adrenaline rush. Maybe you’re becoming lightheaded, dizzy, nauseous Deming, a vision. You start to feel like you’re going to pass out, but here’s the funny part. This is almost the good thing that your heart rate heart rate is compensating. That’s a good thing. That’s, what’s keeping you up because if the blood is low and the heart rate does not go up, you can’t stand up. So it’s a abnormality, it’s a physiologically abnormal response, but it’s also physiologically appropriate response because without that you can’t stamp. This is what happens in orthostatic hypotension and other autonomic disorder. That’s quite common. And in those cases, your blood pressure drops and the heart rate doesn’t go up that much.
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It may be 10, 15 beats per minute. It doesn’t compensate enough for that low blood pressure. This is what’s, what’s called neurogenic orthostatic hypotension. There is a different kind of hypotension or the stereotype of tension, non neurogenic. It’s, you know, when you were sick and you were vomiting and you lost volume, or if you took a medication and dropped your pressure, there is a drop in blood pressure, but there is heart rate elevation appropriately, fine to pump and say, that’s, that’s called non neurogenic orthostatic hypotension. So right here, we reviewed, you know, common autonomic disorders, three of them.
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So if I’m understanding you correctly, the mechanism is that somebody stands up, their position changes, blood drops down, right? A pressure drops first, a lack of venous return. Is that what causes the heart rate to race or is the heart rate racing on its own? And that’s what leads to the other things.
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So the second criteria for parts is the blood pressure does not change. That’s the second criteria. The first one is heart rate elevation by at least 30 beats per minute or greater than one 20 from supine to standing in an adult in senior injures, the criteria is 40 beats per minute. Elevation it’s higher. The second criteria is blood pressure does not change. Actually. Pots is viewed as a disorder that doesn’t involve blood pressure drop is not the disorder of orthostatic hypotension. It’s a disorder of orthostatic intolerance or does static intolerance, but not hypotension. And the third criteria you need to have symptoms, symptoms support the aesthetic intolerance for six months in earlier criteria, there was a suggestion of three months. Usually we want to see six months. It’s a, it’s a chronic disorder of orthostatic intolerance. And I think it’s probably what many of you are experiencing after COVID that you find it’s difficult to stand or exercise or go to the store.
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You feel better when you sit down or lie down. And, and, and that’s chronic word, the static tolerance, the symptoms specifically that patients report are the number one symptom. Number one, across the board is dizziness. There’s in the [inaudible]. That’s very important. Those are the symptoms. The second one is fatigue upon standing, you feeling weak, kind of fatigue, generalized weakness, like you’re going to fall over. That’s very common. Of course, palpitations. If your heart is racing, you’re gonna feel it in your chest. Some people have chest pain. Some people have shortness of breath. Some people have severe nausea, and yet other people feel abdominal pain. Very interestingly abdominal pain. That’s positional is very suggestive of thoughts or an orthostatic intolerance disorder. This year heavy legs people will say, wow, my legs to feel happy when they walk like they’re led. And then when I rest, I feel better.
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That’s another clue that our clues that we teach, you know, young doctors, residents, and nurses, and other doctors in primary care, how to spot, how do you spot? Because patients don’t always come to you saying I have orthostatic intolerance. Then that doesn’t happen. You know, they come with complaints, it’s up to us. It’s up to physicians to figure out what exactly is going on. You know, w w where’s this fatigue coming from, or they would come with headaches and they would say my headaches are bad. As soon as I lie down, I feel better. Always positional change. Positional symptoms is a big clue to us that we might be dealing with orthostatic intolerance. There is one other category that they want to mention for older patients. You know, older patients may have a different presentation than young patients when they have orthostatic intolerance. They may not even feel symptoms of, or, or, or the aesthetic intolerance or what they may experience are false.
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Right? It’s a, it’s not an uncommon presentation that while I fall, or I lose my balance or I, or I stumble. And again, it’s up to us in neurology, especially, but also in primary care to figure out what does that mean? Do you have weakness in the legs? And let’s go check with neurologic exam. Do you have problems in your cerebellum because you’re unsteady. So is there a problem coming in from the back of your brain part called cerebellum, or is the orthostatic intolerance, this illness that you’re on your feet walking, you know, shopping and all of a sudden you feel like you’re about follow work. Is it coming from there? So I want to make that distinction because by age group, people will present differently. There is no one size fits all.
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So for the, for the, this is an right here, but I’m going to say for the typical COVID long haul or which we know there’s no such thing as a typical COBIT long haul, or when they have this standing up and this leg fatigue, is it to their advantage to kind of go with the symptom and sit and rest, or do we try to overcome that gently and try to rehab people by starting to move them a little?
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Okay. So they’re important question a lot. In my, at least in my clinic, the patients I see are younger patients with postcode and discipline Nomia and we teach everyone that if you feel dizzy, like you get in the past out number one thing to do, you have to sit down or lie down with your feet up. You don’t go challenge your body, because that means you can end up on the floor and we don’t want that. Right? So if you feel dizzy, lightheaded, like you’re like, you’re about to fall over. There is no need to challenge yourself. You got to sit down or lie down with your feet up, drink like you’re doing right now, drink a glass of Gatorade or water, wait for this to pass. Because one other form we did not talk about is neurocardiogenic syncope. And that’s a different form than pots or orthostatic hypotension.
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That’s a common form. When all of a sudden you feel like you’re going to pass out and you do, and on a tilt table test or a standard test, what happens is you drop your blood pressure by more than 20, over 10 change within the first three minutes of a tail. That’s one of the requirements. Now what happens when you drop your pressure and your car tree, there is nothing that keeps the blood flow, going to the brain, so that that’s a prelude to a syncope. People pass out, lose consciousness. They fall over, which actually is a good thing because that restores blood flow to the brain. You wake up, you’re conscious, unlike a seizure, you know, what’s going on. You’re not confused. You’re like, wow, what just happened while you lost consciousness, you passed out. That’s another common form. Neurocardiogenic syncope. Now you, a lot of you probably did pass out because just the simple syncope is so common. It affects like 15 to 20% of all teenagers or all young people. That’s one of the most common reason for your presentation is just a simple syncope. That’s not the big problem. If you pass out occasionally that’s fine. The problem becomes, of course, when you pass out three currently, or you feel lightheaded on your feet or dazed, like you’re going to pass out every time you stand up. So there should be a distinction just recurrent syncope once in a while, that’s fine, or frequent recurrent disabling, syncope that affects your functioning state.
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I saw a study recently about teenagers where it’s a, the most passing out was related to beer and wine coolers. Have you seen that one that was in Milwaukee? Anyway so my question, my next question to you is this can you talk a little bit about, so in my opinion, as a rehab specialist, so we want to get people moving. Okay. My experience is that for many patients two minutes, awesome. Three minutes, awesome. Three minutes, 15 seconds. Boom. It’s like the car has flooded and the engine has flooded. Can we talk about the role of compression, stockings, and leggings abdominal binders, salt and electrolytes, and, and, and how should we be using these and what should we be using and how,
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Okay. So every time I have a patient was disciplined, the Lumia, we go through treatment options. We always, always, always start with non-pharmacologic approach forced, right? Regardless of what’s going on, whether you are on one medication or 10 medications or none, we always want you to implement non-pharmacological approach because it can help. And as you mentioned, the, our compression stockings and abdominal binders that are simply designed to basic constrict to constraint your lower body, to get the blood blood back up to the heart and to the brain, there are different kinds. So the ones we typically recommend are the strongest compression, 40 to 60 millimeters of mercury, which just kind of, you know tight, they are very tight. And we recommend compressions up to your waist. So not knee highs, not thigh highs up to your waist. Abdominal binders can be very helpful, especially when you pull blood in your abdomen and pelvis, which does happen quite often.
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Sometimes patients drive compression, stockings. They feel like they’re not helping. And when they try abdominal binders, that helps more. It depends. Now the problem was this compression stockings. You know, it depends where you live. You know, if you live in Florida, you might be having problems wearing these heavy type things on you, because it’s hard. If you live, where I am now was the fall, whether it’s going to be okay. So they, they might be tough to put on as well. And they could be, you know, uncomfortable. So sometimes I tell my patients, you know, by very tight, tight, those shapers that women now with them talking about, you know, the buy them very tight tights, try them out, see how that is. Yes. They’re not medical grade, but it would help a little bit. And when people said, well, none of the compression stockings have worked.
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I’m just going to wear knee highs. You know what? I never say, no, it’s so benign. And I say, Hey, that’s fine. Whatever works, what? They may not work, but if you feel like you need to wear them, do wear them. So that’s how I approach this. There are lesser grade, there is 20 to 30 millimeters of mercury and there’s 40 to 60 and you can be fit for them at the medical supply store. So if you have insurance and your cardiologist neurologist, primary care doctor prescribes two pairs, oftentimes insurance would cover two pairs medical grade, and you can be fitted properly for them because every one is a different size.
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So your preference is, is go right to the waist high.
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Yes. Yes, because they also compress the pelvis every day. You know, if you compress it up to your knee, that that doesn’t mean much. Everything is accumulating in your veins and arteries above the knee.
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And then how often, and when, and for how long should people be wearing these? Because I get a lot of people who say, well, you know, I’ll wear them today. I won’t wear them tomorrow. My understanding of how we retrain the autonomic nervous system is with consistency. Is that right?
(00:31:08):
Well, everything is, you know, we wish it was like black and white. I wish I could come on here and give you like an excellent case control study that actually showed how great none of it is like that in the field. But the Nomia, as in most medicine, you know, we’re dealing with not black and white things, but all shades of gray. So this is how I approach this, you know, with years of experience and, you know, hundreds, hundreds of patients with disability, I asked, does this work, did you feel like you, like they help? And then they say, yeah, I think a little bit great. Then you should wear them. When you wake up until you go to bed, you take them off at bedtime and wear them every day. But if they say, I try that, nothing I say fine with me, you don’t need to wear them.
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You don’t need to. Everything is symptomatic. I tried to go by how the patient feels, because I feel like that’s even more important than the vital signs. Because as probably a lot of, you know, you may have good vital signs. Your heart rate is good because you’re taking a beta blocker. Your blood pressure is good because you’re drinking fluids and eating salt. Maybe you take a drain, everything looks good, but you feel very, very sick and people and doctors and cardiologists, especially because they want to hang, you know, they want to use these vital signs. Like, what do you mean? You feel sick? Your heart rate is 90. When you’re standing, your blood pressure is one 20 over it. That’s perfect because it’s not about, it’s not about blood pressure and heart rate. There is also cerebral perfusion. That’s a very important concept, cerebral profusion, because what’s going on here at the arm, when the doctor takes your vital signs, doesn’t mean that that’s what’s going on in your brain.
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We know that patients with spots on the tilt table tests have a lower oxygen levels as measured by cerebral oximetry. We have the tools in research, then patients who are healthy. And similarly, we also know hypoperfusion that’s happening from the ocular studies and all other kinds of studies. And just recently, there was a great study from Hopkins, from the colleagues whom I know they took patients with spots and patients with chronic fatigue syndrome and patients without pots, but with chronic fatigue syndrome and they identify cerebral hypoperfusion. Even if you have no evidence of pots, even if you have normal tilt table, that’s a very important concept that I think a lot of dr. Smith, because they want to fix these vital signs and they feel, once I fix your vital signs, you should be fine. That does not happen. There is
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The first person who mentioned that. That’s the first time I’ve heard that mentioned in all discussions of COVID. Now how do you measure cerebral profusion?
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That’s a very important question. There is no easy to like, like if you ask me today, I cannot send the patient to get Siri book perfusion. Now I can get certain scans, like MRI perfusion with certain exotic sequences, but insurance is not going to pay for this, you know, exotic testing. I can do Dopplers to measure velocities, transcranial Doppler. So we have that. And so a lot of these tools are in research, in research that involves a serial blood flow, or there are many PhDs in the country working on this specific topic, cerebral blood flow. There are research labs and researchers who do that and clinical level. We don’t know. We assume, you know, we assume when you tell me that you have brain fog, you have fatigue. You have headaches, you can’t concentrate. I need to assume that we’re dealing with symptoms of cerebral hypoperfusion.
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Even if your blood pressure and heart rate are just fine. And even if you pass out, both subs is 99, 98. You still feel pretty bad because pasta bowl sucks over here on the finger is not the same as oxygenation of your brain, same issues. There is abnormal physiology there, a abnormal physiology that we’re just beginning to understand. You know, we, we used to view any CFS as you know, years ago, people thought while it was psychosomatic, it was then we moved down to maybe it’s metabolic, right? Maybe it’s mitochondria. Then we moved down. Well, the cardiovascular system is not coping the two day exercise, a test that is done in certain labs in the country. It’s showing that the pain that patients with any CFS are not doing well on the second day. So there is that. And not now, I think rightfully so we moved and that doesn’t mean they were wrong.
(00:36:41):
No, they were right. But now we move down to brain. Is there evidence of neuro information? And we have preliminary evidence that yes, there is evidence of neuroinflammation, some evidence preliminary. And if there is evidence of neuroinflammation, maybe a brainstem level it’s obvious that there is going to be, you know, sympathetic overactivity coming from the brainstem, not from the peripheral nervous system. These are all new concepts and not everyone is on board. You know, new things are very hard to implement. There is dogma in science, right? We used to think of parts as just heart rate and blood pressure. You know, so if you don’t have a heart rate elevation or blood pressure change, how can you have pots symptoms? Well, people have them. So I think the research is moving in absolutely the right direction in any CFS and the stuff, the Nomia fields that now we’re getting a bigger picture is a very complex picture that we cannot just put labels to was heart rate, blood pressure or diagnostic criteria for any CSF where we say, well, you know, you’ve had this fatigue for six months. You’ve had an open gnomic dysfunction and the tilt table test showing autonomic dysfunction is actually one of the minor criteria from the CDC when they updated it in 2017. So denomic dysfunction is very important to these syndromes of seek whether it’s. Yeah, yes.
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So we, we’ve seen a number of parts of patients over the years, and we’ve seen a lot of pulmonary hypertension patients who often have similar exercise response, where they stand up a heart rate spikes. We often bathe the system in oxygen. We use high flow oxygen during exercise. Do you think that’s, that would be beneficial in this situation with pot, with COVID I’m sorry,
(00:38:40):
You know, COVID, we need to kind of step away from everything I was discussing undisciplined Nomia and now talk about code because we don’t yet know what this code the discipline is. And, and we have to do research. We have to identify these patients fairly the same as my post influenza dysautonomia, or are they different because they may not be the same on the outside. It looks to us that of course, symptomatology is similar. There is the fatigue in techie, cardia and shortness of breath and exercise and tolerance and BrainPOP. It appears similar, but we need to objectively prove that they’re similar to the other patients or are they different. That’s why I talked about cardiac MRI. It’s a very interesting, and then a great tool that I believe should be accessible to not only athletes and not only research status in the us or Germany.
(00:39:41):
I hope it becomes available to patients and insurance needs to pay for it because it’s an expensive study. And so in terms of that, when we scan patients with COVID symptoms, we already have evidence that there is quite significant inflammatory abnormalities there at the heart level. I’ll tell you for sure that there is the R zero status that took patients with dysautonomia or any CFS in the past, and they, and identified anything similar zero status. Now, what does this tell me? I don’t know. It tells me that we don’t know what all other discipline Nomia patients are because do they have the same evidence of inflammation? Is it coming from the heart? Is it, is it why we see techie cards and chest pain and a lot of cardiac symptoms? Or is it completely different? For example, if the dysautonomia patients on showing normal cards that camera, and it’s only COVID patients that show inflammation at the heart level. So while we want to lump them together, scientifically we’re not there yet.
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Do you have a sense? And I know that the answer to so many questions about Kobe is we don’t know, but do you have a sense of progression or how, how, how much better people can expect to get over time?
(00:41:17):
Yeah, it’s a very important question. Because what’s the prognosis, you know, we, we kind of concentrated on acute COVID and, you know, for people to survive the acute phases and we call it success because the death rate mortality is lower now, but we haven’t even begun to understand whether the long term implications. So I’ll give you what we know from the certain Nomia, you know, the first study that came out on fats in early nineties, late eighties painted a very rosy picture of pots patients. And they said, you know, two to three years out, 80% are doing really well. Great. And still, we will end by that study. And when I started practicing in the community, I didn’t see those numbers. Okay. I didn’t see them. My colleagues didn’t see them. And thankfully the study was updated to give us a more realistic picture of what happens to patients with spots.
(00:42:27):
And what we know is that only less than 20%, 19% felt that they were recovered normal. So to speak at an average of five years out, 50% felt that they’re better than they were five years before. And then some people felt worse. That’s the more realistic picture. There are improvements, you know, there are worsening and, and they’re, you know, staying the same or better. This is for the regular, just certain only. Now when we go with [inaudible], of course there is no data. What we know is that some patients have symptoms six months and probably some of them are here. Now, personally, the patients I have, they are getting better. Of course, they tend to be younger. People motivated that have found me and they want to get better and they have great testing and good treatments and good doctors they’re getting better. Some patients are back to work full time, and they just have residual symptoms. Usually that’s fatigue and exercise and tolerance. It’s much harder to get past. And some people are still struggling. But I personally, in my clinic, I do not have horrible disasters that I can say, patients that I have are milder and are getting better with treatment for just the no ma’am.
(00:44:01):
So we’ve spoken about the fact that many of the long haulers are younger. Many of the long haulers are people who were told, stay home and didn’t get treatment. And really in many cases by the grace of God survived you know, at home alone, do you have a feeling that had these patients, and I’m not looking to point fingers or shift or create any blame, but do you have the sense that if many of these patients were treated right off the bat, that a lot of these long haul symptoms might have been avoided? You
(00:44:32):
Know, we want to think that way, wouldn’t it be nice if we said, well, if I do everything right, then the outcome are going to be great. And the real honest answer is this is a very, I think it’s a very unique virus because as I mentioned before, not only it can cause severe acute illness, it can create, create a very bad post viral illness. When the viral illness was very minimal, like Karani nose or, you know, something minor. We know from some case before it’s in his theory is that some young people who had stroke, they tested positive for COVID. They never even had acute viral illness was runny nose or upper respiratory disorder. So, and similarly young athletes may have very little or nothing. And yet suddenly, you know, they have all these complications. So it’s a very difficult, nasty virus that, that we need to, you know, we need to investigate, I think it causes a vascular kind of picture of vascular prophecy.
(00:45:44):
I think it causes pro from Biotics state. It can cause not only immune alteration, but auto immune disorders, you know, at least 50% of patients with scope it tests positive for antiphospholipid antibodies. That’s very important finding these are antibodies that are, that increase your risk of clots, blood clots in the legs, blood clots in the lungs. Ah, and that, that that’s finding. So we see this being stored the way virus that perhaps affects the, and the filium, you know, the endothelium is the inner layer of blood vessels and create this vascular vasculopathy type of disorder that manifest in different ways in different people. I think it’s going to be important to decide gene genotypes. What genotype, what kind of genetic differences are there in population that makes one person react to the virus as if, you know, not much is happening acutely or longterm. Some people end up with cytokine storm, as you know, and then others looks like more young people end up with not much. And yet lung COVID I’ve had, I’ve had the one young woman who never had any respiratory respiratory symptoms. She was always her, nothing, respiratory suddenly severe fatigue. Can’t keep her eyes open. Hypersomnolence difficulty going to the store when previously she had none of those. So that’s the kind of issue. So I’m saying that this virus is very mysterious and not like other viruses,
(00:47:38):
Very insidious. Yes. one of my friends described it as COVID will find your weaknesses and exploit them. So do you think that there’s do you think that much of what we’re seeing is that COVID is causing, and again, I know this is a kind of a, we don’t necessarily know answer, but I’m curious about your opinion. Do you think that that covert is, is causing many of these conditions? Or do you think that COVID is kind of unmasking conditions that may have already been there or both?
(00:48:13):
It’s a hard question to answer because the virus itself can be a big trigger because people test negatively, supposedly the budget cleared the virus. That’s what we assume we haven’t figured that portion out, but we assume that if you test negatively, then there is no virus in the body. The actively, at least not in this theorem, at least not in the nasal mucosa that we test. But what happens after that? It appears to trigger a cascade of events in the realm of immune auto immune pro from Barteck pathways. And when you say, well, he’s a thumb masking, I’m not sure, you know, because I’ve, I’ve had lung COVID patients who ha I just had her last week. She had the flu before and all of the other viruses that kids brought in and she’s never been sick that way.
(00:49:21):
But with this round, she got sick. Her kids are better or, you know, family members are better, but she’s the only one who hasn’t recovered. So it’s very hard to say, I think right now I have a couple of patients who had some kind of abnormality in the autonomic nervous system before, for example, they were predisposed to fencing, right. For example, or I think we’re predisposed to dizziness, but they function great. And now with supposed viral trigger, now they’re facing steadier symptoms. So that’s an important, that’s an important point. And you know, some people just walk around feeling healthy. Maybe they have some asthma. Asthma is very common in the U S maybe they have some allergies and they consider themselves healthy. But when they stress in the form of Corona virus comes in, suddenly, as you said, perhaps if the masks, perhaps it worsens
(00:50:28):
The underlying predisposition that they may have had. So this is an area we just need to explore better. You know, for example, there was a short case series out from Europe, where they took for a young and healthy male who ended up on ventilators. I think two of them were brothers two were unrelated and they did genotyping and they found that all four of them had a problem on the X chromosome at deletion in certain area. Now, could this be a marker, other authors going, you know among us healthy people with some genetic abnormalities on X chromosome or other, or, you know, HLA type, what controls your immune responses? We don’t know, but that would be the area to figure out.
(00:51:25):
Thank you. You mentioned before the compression garments and you just briefly mentioned Gatorade, are there other things that you like is, is Gatorade your electrolyte of choice? It’s got a lot of sugar. Are there other things you recommend and also salt tablets?
(00:51:42):
Yeah. I mentioned Gatorade as one of the options, but when I was starting to talk about non-pharmacologic measures of binders and compression, stockings is just one part mainstream is we recommend that people consume at least two to three liters of fluids per day. Everyone was disciplined. Nomia two to three liters of foods. Now, if you live in Florida and you’re out walking around and it’s 95 degrees, you’re going to have to increase that consumption of fluids. And the fluids are, it’s not what they’re. A lot of my patients say, I drink a lot of water. It’s healthy. It is healthy, but it’s not going to stay in your body because we’re not made the food. They were made the physiologic solution that can say in sodium and chloride, potassium, and all other things. So if you drink a lot of water, you’re going to end up urinate that out.
(00:52:38):
That’s just how the body is. And funny part about who there is that you can drink so much that you’re actually going to wash out important electrolytes. So don’t drink a lot, the father, but drink electrolyte solutions and that can include water and maybe a soul tablet. Okay. So the other thing we recommend is consuming at least five to seven grams of salt, depending on your blood pressure. So if you’re, you know, 20 years old, your blood pressure is fine. Consume at least seven grams of sodium chloride, salt per day. That’s a lot of salt. And as I always explain to patients, the American diet is very hard to get that. So I recommend that patients get salt tablets, okay. And they come in different shapes and forms. Some of them are interior coded. So you don’t feel nauseous from them, but you can take a small tablet and it’s going to have 450 milligrams of, of salt, of sodium chloride in it.
(00:53:42):
Other tablets, disco, thermostats. I have no ownership. I have no stocks in the company, but those are simple, easy, and cheap and thermostat thermostat. Yeah. That’s one kind, there are others. There is sodium chloride. One gram, there are the tasks rooms that are non tablets. You know, I don’t want people to think that, you know, this is my preference. Absolutely not. But for as an example, if you take thermostat 450 milligrams of spoke in one tablet, and let’s say, you give you your drink, you know, maybe 10 to 12 ounces of water. That’s a good bowl is oral bolus. So you giving yourself an oral same in bolus. Okay. And when you do this acutely, we actually have studies to show that you acutely raise your blood volume, acutely decrease your heart rate and maybe decrease dizziness. And maybe it will allow you to sit more, walk around more and not feel Daisy.
(00:54:44):
Like you’re going to pass it out and buying you some time. So that’s an important point. Fluids and salt, the fluids can be an electrolyte solution. Some people throw in some salt in it, you know, but who can drink salty water. It’s very hard. Some people throw salt and sugar and maybe add a little lemon and drink this throughout the day. So you want to drink an electrolyte solution and not simply water. And you want to increase the intake of salt through your diet, salty snacks, like pretzels like pickles, right? You want to eat that, that increases your salt intake. A very important point. If you’re an older person, and if you’re running a blood pressure of one 30 over 80 or one 35 borderline, or one 40, your requirement is going to be now, you still don’t have the intake of salt, but there’s not going to be five grams. It’s not going to be seven grants. It’s going to be more like two to three grams. You know, years ago there was a movement, no salt, zero salt diet, the way to go. And then suddenly there were studies that showed that even patients with hypertension needs some salt in their diet. So salt is not your enemy. The amount is going to differ.
(00:56:13):
Do you have a specific number of French fries you recommend per day with that salt? Zero. No fries. Okay. Gotcha. Gotcha. Couple of other questions. So a lot of people report this kind of vibration within their body. What on earth is that?
(00:56:33):
So it can be different things. I’m a neurologist, not only specializing means at Sonoma. I’m also a neurologist in general neurology and it’s for us in urology. It’s going to be very important. If we see that vibration, some people say I have tremors. So I’m going to test to see if you actually have tremor. If I see you have no visible objective tremor on my exam, then as you said, we’re going to call it internal, internal tremors or shakes. What can it be? It can be many, many things, but then our discipline Nomia patients. A lot of the times, it means low blood volume. You got the load yourself. It can mean also sympathetic overactivity, just like you said, just like I said, previously, that the sympathetic nervous system is going to activate your heart rate. Blood pressure. You will feel hot. You will feel sweaty. And you feel this internal shakes as in fight and flight response. So this internal shake can be different things. And I need to specify that you importantly, you want to rule out electrolyte abnormalities, like your sodium potassium, calcium need to be another level. Okay. And once we rule out anything bad, your blood work is normal, which is common in our patients. Then I say we got the increased fluid intake because a lot of patients feel when they load themselves out fluids, all of the symptoms get better.
(00:58:10):
So when you say low fluid, so I assume you’re talking about low plasma volume. What’s actually moving. Are they feeling the fluid because there’s more space for it to move around?
(00:58:21):
No. You can’t feel, you can’t feel
(00:58:26):
Moving. What are we, what are, what is that sensation? That’s what I don’t get. Okay.
(00:58:30):
Yes. Yes. It’s a sensation of internal, right? It’s you know, when you feel nervous and you feel butterfly and you feel like you’re shaking inside, but nobody can see it. This is the part of sympathetic nervous system response. It’s a sensation. That is part of the autonomic disorder. The symptomatology, it’s a sensation
(00:59:01):
That, that probably is what was going on. I saw this old lady the other day that swallowed a fly. No, I’m, I’m just joking. I’m just kidding. So another question, what is the, with that in mind with the, with the vibration, what is the relationship to lying down and sleep? Because a lot of people are awakened by this.
(00:59:22):
Okay. So we need to define what we’re talking about. So this, this sensation, internal vibration, it’s important that you go to your urologist with this complaint and that your neurologist goes through the proper workup, and it’s going to include your electrolytes and needs. It’s going to also include vitamin levels. Very common things are common. So we don’t want to say, well, it’s, COVID, you know, a lot of the times I hear doctors say, well, it’s okay. It’s just a phenomena. We can do that. We need to be sure what we’re dealing with because we don’t want them. Thanks. So your neurologist is the one exam, just like I said, you’re going to do this. You’re going to do that. We need to see if there is visible tremor that we see. And if we don’t see it, we also do a very important exam sensory exam, right?
(01:00:16):
I have to check your sensations in your feet to see if you have decreased since stations of coldness or if I, or vibration, or if I see that there is objective evidence that your sensations are decrease, I have to do a proper workup, and it’s going to be your vitamin deficiencies. It’s going to be, you know your blood glucose level. Let’s not forget very high blood glucose level as in diabetes and very low blood glucose level, as an hypoglycemia are going to be important with this, which would describe vibration sensation. So I gotta go through proper workup before I say, well, it looks like I didn’t find any identifiable cause on the blood work, your 12 flips go to be six looks good. You’re not diabetic. You’re not hydrated. Your electrolytes look good. This is not essential tremor. This is not Parkinson. And then I can say probably the sport of your discipline, Nomi, and you mentioned sleep now 4:00 PM to sleep.
(01:01:27):
They have to have very normal mechanisms in place, your brain, your brain STEM, your cardiovascular, and importantly, your autonomic nervous system. And then in the evening, normally the parasympathetic nervous system is going to be dominating. The parents, the sympathetic nervous system is going to be down because in the evening you come and with diurnal variations in your brain and your cortisols and your melatonin levels and your epinephrine and norepinephrine, this is going to be set for you to sleep. What happens in this, that the Nomia, as I said, sympathetic overactivity. So you’re going to try to go to sleep with the sympathetic. Overactivity is not going to be surprising that there is going to be sleep disturbance, right? Because there is a hyper activation of sympathetic nervous system. So people will be jolted from sleep, as you mentioned, or they will say, or they will have weird vivid, scary dreams.
(01:02:39):
Their heart rate will go up abnormally. They will have frequent awakenings and the sleep will become unrefreshed, which is what happens in patients with dysautonomia, chronic fatigue syndrome, fibromyalgia, you name it. So again, it’s a spectrum of sympathetic overactivity and what I want to do as a doctor, I want to decrease that sympathetic overactivity with medications and non-medication treatment options that we just discussed would solve compression, stockings, XE, breathing, everything that slows down your heart rate, your breathing, everything that enhance it, enhances parasympathetic nervous system and everything that decreases sympathetic nervous system. That’s what you want to do before bedtime to improve your sleep patterns. Sleep disturbance is very, very bothersome and important to our disorders.
(01:03:44):
Is there any specific one breathing pattern that you recommend over others to quiet the sympathetic nervous system?
(01:03:53):
There are studies on that. There was actually a recent study showing that actually pulmonary therapy or, or breathing exercise can improve certain substance of pots patients. And again, this is not my area, so you probably can tell us the patterns, but it’s the kind of pattern that decreases sympathetic nervous system and increases the parasympathetic nervous system. It’s the kind of breathing. They also teach you if you have anxiety and panic attacks it’s the breathing from your abdomen. That’s the kind of breathing that is done in meditation and yoga.
(01:04:36):
I have two more questions and then I’m going to go to questions from the audience and Beth, if we could open up the chat now for questions as well, if people want to type I would like to know about the relationship, many women report, a worsening of symptoms around menstruation. Can you talk about that for a little bit?
(01:04:58):
Sure. So in the Southern Nomia, there is a big area of, of hormonal influence. What do we know about Pat specifically is that 80% of our patients are young women of childbearing age from age 15 to age 50, but patients who
(01:05:18):
Are older and younger others as well, there is a huge hormonal component. Just by the fact alone that our patients are young women. Another fact is the common answer. The age of answer is usually around 14 years old. The age of onset typically correlates with the age of men or kin. Okay. So there is that hormonal influence. Another thing we know is that one of the other triggers, we said, pots, it’s triggered by a virus, whether it’s flu or part of a virus or coronavirus. Another trigger is pregnancy. Pregnancy is a common trigger. Postpartum onset of pots is, is common. And yet another subset of patients that I sometimes see are winning in their perimenopausal or almost menopausal age who start having hot flashes and things like that. And they develop this stuff the Nomia later on in life. So there is a big component.
(01:06:21):
And another interesting thing there is that studies are showing that men do better with dysautonomia than women. Not surprisingly. I see that in my patients, the men was disciplined army. I see they’re still able to exercise some and still able to work. They’re not as disabled because we know that the Nan, the autonomic nervous system is just stronger. There just, there are gender, there are biological differences. And so that’s a big trigger. If, if, if you have periods that they’re coming on, then worsening of discipline has symptoms right before your period. This is very common, which is a lot, which is why I quite a few of our young patients go on birth control to suppress menses and not that.
(01:07:15):
And what about the relationship with autoimmune diseases? I know it’s kind of very new and we could probably talk about that for a year, but in 30 seconds or less,
(01:07:27):
Well, I can start with that. My study was the first one demonstrating in the S in a cohort of a hundred patients with spots that there was a higher prevalence of autoimmune markers and auto immune disorders in patients with spot. Then in general population, we start there there obviously there is the disconnection, and then we move from there. Now we move to more specific antibodies that are being discovered as far as the pots and as part of discipline in general, that’s what, that’s what we need to research. You know, it’s a hypothesis that I have is Corona virus causing an autoimmune response where the body now is producing antibodies, possibly to the adrenergic receptors, alpha beta. We know that this is happening in decisional means a patient’s not connected to COVID. So it’s, COVID a trigger of antibody formation. Then, then binds the receptors on the cords of the vascular or autonomic system and causes this post viral. This, that the Nomia in other words, is post viral, discipline, Nomi, and autoimmune disorder. We’re getting there, but we’re not exactly there.
(01:08:52):
Gotcha. could you talk a little bit about body temperature regulation? So ever since the outdoor weather turned significantly cooler, I’ve been unable to stay warm. It’s still 60 degrees, but I feel like it’s much colder and I’m often shivering with intense goosebumps. Is this related to dysautonomia? And is there anything I could do about it?
(01:09:13):
Yes. So temperature dysregulation is one of the features of all autonomic disorders, because the autonomic nervous system controls how your body regulates temperature. We have autonomic function tests, and one of them is a test called QSA, which is a quantitative for the motor eccentric to the motor needs sweat response. And we know that in patients with spots, at least 60% do not produce these adequate KUSAR responses. Okay. So there is a difference in sweat. A lot of times people feel like they lost the ability to sweat properly. If you’re not going to have the nerve endings that allow you to sweat properly, as in small fiber neuropathy, you’re going to feel overheated all the time. And heat tolerance is one of the features of parts and deceptive. Nomia. Some people have cold intolerance, they can’t get warm. Even if it’s a hundred degrees out, this is all part of the same circuit that’s abnormal in controlling your response to different temperatures. So it’s best to be in cool environment, avoid extreme heat and avoid extreme cold.
(01:10:42):
You had mentioned you had mentioned sorry. You had mentioned non-pharmacologic treatment of pods. Can you talk about some of the medications or the pharmacologic treatments?
(01:10:58):
So blood volume is very important. Concept hypovolemia is at the plate in the certain Nomia in that to this scent, we use blood volume expanders. One of them is floor enough fludrocortisone is what your body naturally produces and helps your kidneys conserve a sodium and water fludrocortisone is not a big steroids. It’s a weak mineralocorticoid that we use. And there have been studies to show that that helps. We also have vasoconstrictors, you know how we said blood goes down and it’s not coming up, or part of it is because the vessels are not, vasoconstricting properly, both veins and arteries. So we have my w we have made a drain, which is alpha, alpha one, vasoconstrictor. It vasoconstricts your receptors. And that allows blood to move up to the heart and the brain. And another very important first-line category are beta blockers.
(01:12:02):
Beta blockers are excellent. They’re going to slow down your heart rate and they’re going to decrease your sympathetic overactivity. We use a couple of beta blockers. One is propranolol, which is a beta one beta two blocker that goes to the brain and helps the brain to come down. So to speak. We use it. It’s FDA approved for migrant prevention, and we use another one at 10, the law, which is more cards is selective. Would you go straight to the heart to decrease heart-rate and sympathetic over activity? That way I want to mention that beta blockers are used also for social anxiety, public speaking. So it can also help with these internal vibration. You speaking off, I use them in my patients. So talk to you, doctor, a low dose of a beta blocker can just get rid of them. And it’s not the benzodiazepine, which is, you know, has addictive potential.
(01:12:58):
I try not to use them too much or frequently. So beta blockers, beta blockers, they’re very, very important. We also have a medication called Mestinon. It’s a medication that increases acetylcholine and kind of enhanced this, this parasympathetic nervous system action. And that’s a very good medication as well. Mestinon then we have other medications. We have stimulants that I use. If patients feel, you know, very fatigue, there is brain fog. They have to study for an exam, or they have to work. Maybe we use a low dose of stimulant, like ADHD, drugs, like Adderall Ritalin, maybe I’ll use Provigil or Nuvigil for patients with CV or hypersomnolence who can’t keep their eyes open. We also have we also have antidepressants that I don’t jump to, but they have a role. Some patients will respond to antidepressants and the, we have a medication that was FDA approved for orthostatic hypotension called drug C DAPA that improves your blood pressure.
(01:14:20):
That way we also have a medication that’s not beta blocker that can slow down your heart rate called evaporates. Then evaporating is newer in the us, but it’s an old drug from Europe and it slows down your heart rate, but it’s not the beta blocker because some patients do not tolerate beta blockers. And I think I would mention very importantly, that are all the other therapies, like a example, immunotherapy, that’s coming out for autonomic disorders that has immunologic basis like IVA G like subcutaneous IgG. Those are expensive immunotherapy drugs that have a place in, in patients with dysautonomia and comorbid what the immune disorders there are also exercise protocols have been shown to help. There is an excess protocol from Texas that is very intense that some people can engage when and can, you know, improve significantly to the point that they no longer meet criteria for paths.
(01:15:29):
We also have IVC mean we can use it sometimes for refractory, for treatment refractory cases. We use intravenous same. So we have a bunch of things. You just need to know how to use it, because you know, there is a lot going on. Number one, comorbidity in parts are headaches, migraine headache. And so we have to treat headaches. If a patient has uncontrolled headaches, it’s going to make their discipline only worse. And if they have this certain OMI, it’s going to make their headaches worse. So we have to address both comorbidities. I address neuropathic pain, numbness, and tingling. If there is, I didn’t mention, I should mention this cause there’s a lot of talk about mass cell activation syndrome. We haven’t talked about, it can be comorbid about 20% of patients with spots, at least 20% have a mass cell disorder, mass cell, maybe also a substrate for post COVID, this autonomy. And even for acute site, the kinds of storms there is talk about that. So when a patient feels that they’re suddenly allergic to everything, there are suddenly ha they suddenly can’t power it food that they used to eat or environment. They have rashes. They have a lot of GI symptoms. They have itching, respiratory symptoms. I test them for mass cell activation syndrome and they treat them when they treat them with antihistamines.
(01:17:10):
And they improve. I know that there may be mass cell activation syndrome in my discipline Nomia patients.
(01:17:18):
Okay. I’m going to ask you a question and then we’re going to go to the speed round. Okay. But the question I have, and I’m sure a lot of people have the same question is you just mentioned tonight about 200 things that I’ve never heard before in the context of this conversation. And people have difficulty, even sometimes getting a referral to the most basic specialist. That’s like an oxymoron basic spec, but like some people can’t even get to a neurologist. How would, what do you recommend to people who are saying yes. Yeah. Like I see people it’s like, I feel like if this were a church, people would be saying, amen. But the idea is how do we get this treatment? How do we get this evaluation?
(01:18:03):
So there is a big problem in healthcare. You know, it’s hard to see a specialist. And when you see a specialist, these issues that we’re talking about, you know, dysautonomia posts, viral syndromes for a long time, it has been considered not to be mainstream neurology. And it has been considered not to be mainstream immunology and cardiologists felt that it’s really not up there early because of cause nothing to do with heart. The heart in the Sonoma is usually fine. That may be different in post-school the discipline Nomia or that may change if we scan regular, I don’t know yet, but most basic cardiovascular tests, echo stress, test EKG, Holter monitor. It shows no problems with the heart and no evidence of cardiac arrhythmia. The sinus tachycardia is not the cardiac arrhythmia in their world. And the infectious disease doctors used to say, no, there is no evidence of virus or infection or Lyme disease, right?
(01:19:15):
Post line syndrome. We’re talking about always 10 to 20% of patients who couldn’t recover. Where do these patients go? And so in this field of autonomic disorders, that used to be a rarity. I think now it’s becoming more mainstream. People want to learn about what the anomic disorders, you know, years ago, nobody cared that much about parts. And now look, you know, we’re, we’re talking about post COVID discipline. Nomia it’s mentioned, you know, on CNN in different articles, we have great nonprofit organizations that have done great things. Research wise, we are in this Weiss. So some of us have been in this field, but as you mentioned, it’s certainly not enough. So I always hope that, you know, primary care physicians and my colleagues in neurology and our colleagues in immunology and allergy and rheumatology and even cardiologists can now become sort of, you know experts on this set.
(01:20:23):
The Nomia because everyone is going to be seeing patients was supposed to go with symptoms. Everyone is going to be seeing patients. And when they read [inaudible] and when they see listen to webinars like that, they’re going to get ideas and clues w what do I do? Where do I go with this? There are 50 symptoms right now, right? The patient is not getting better. EKG is good. Chest. Dexter is good. Blood work is booked. What do I do? And I say, if forced identify clinically, is there evidence of orthostatic intolerance, right? Is the clinical evidence, send them for a seal table tests they’re available? And if you don’t have access to a tilt table, test, do a simple, easy, cheap. What we call man’s still table pass in, in, in your clinic, lie them down for, you know, for five minutes, check, heart, rate, blood pressure, stand them up, let them stand for a few minutes and check blood pressure and heart rate in the increments of three minutes until 10 minutes, write down the values that you get and write down the symptoms that they experience. Here’s your diagnosis of pots, easy, you know, in the social distancing kind. Right now, I ask my patients when I do video or phone counsels by video, I ask them to do that in front of me. They slap on the blood pressure cuff and they stand there. It’s a self administered stand test. It works. It’s accurate. There is your diagnosis.
(01:22:03):
How about a sheet that we, that we use, which I will make available to people, which is exactly what, what you just said. And we’ll send this out in an email so that people can, you know, measure their heart rate, blood pressure, oxygen, and symptoms as well. I would would like to, again, go back to a few questions. Speed round. I’m going to ask you if possible. Only. Yes, no, maybe so, or I don’t know. Okay. So so when I had an active COVID, I had a lot of salty chicken bullion broth, which was helpful and easy to tolerate. Yes, no. Or maybe so chicken broth. Okay. I had an echocardiogram that showed no heart inflammation. Could an MRI show something different?
(01:22:53):
Yes. If you can get cardiac MRI, get it. It’s hard to get it.
(01:22:59):
Okay. This one you could, you could answer normally, because this is important. How do you treat the nausea and GI symptoms and how do you treat the vertigo and bad headaches? That’s so cool.
(01:23:10):
Yes. That’s very common. And as I always joke, unfortunately, or fortunately, I had to also become part of the, you know, part of partly a GI doctor, partly a sleep disorders, doctor, partly a psychiatrist, partly a cardiologist and Parkland immunologists. But what they will say to that is first we got to be sure that the symptoms can be attributed to dysautonomia. So I always always send them to a GI doctor rule out the usual GI conditions and use this autonomy only as an explanation when there is no other more common explanation involved that way I don’t get to miss all SIRS. I don’t get to me, you know, gallbladder problems and I don’t get to miss celiac disease. Right? So you gotta make sure that your nausea is not due to GI pathology. And when your GI doctor goes through the workup and says, I can’t find anything wrong.
(01:24:18):
Of course they want to use PPIs and stuff like that. And while it could be your discipline Nomia we treat discipline Nomia. We treat this at a Gnomeo with fluids, salt, small frequent meals to avoid hypoglycemia. That’s another important point we did not have time to discuss is that if you have the soprano Mia, you don’t want to be going, you know, for hours and hours with, without any oral intake, you got to keep your blood glucose level because our patients are sensitive not only to dehydration, but also to hypoglycemia. So you you want to treat underlying bots on your credit, genic, syncope, orthostatic hypotension, and then if the nausea is still happening you know, we can talk about your Zofran and some other things that, that people use for nausea.
(01:25:16):
Are there treatments related to autonomic cause shortness of breath,
(01:25:23):
Similarly, and especially in the, in the time of the pandemic from coronavirus, you first want to see your pulmonologist, visit your pulmonologist, get the pulmonary function tests done, get your oxygen checked, get your cardiac echo to make sure there is no fluid around the heart. Do all of that before you come to me and say, my doctor said, you know, I’m short of breath before this economic. I need to know that it’s not your asthma or, you know, your post COVID lung scarring or anything like that. If it is due to dysautonomia, shortness of breath is one
(01:26:04):
Of the symptoms. And some patients have that predominantly. They don’t have much techie cards that they’re just very short of breath. It may it may be rooted in how you breathe. Hyperventilation is sometimes a problem in our patients, hyperventilation. You don’t even know you’re doing it, but remember the sympathetic nervous system, not only increases your heart rate, it increases your rate of breathing. So you don’t even know it, but you might be. Over-Breathing creating this, you know, low low state for, you know, and your pH goes up. So that that’s very important. That’s very important. Once again, you want to correct hypovolemia if you low on volume, you’ll have worse shortness of breath. You want to take your medications may be a beta blocker that paradoxically, right? Because some, some doctors don’t want to use beta blockers. They’re afraid that’s gonna make the asthma worse.
(01:27:07):
Quite the contrary, what they see in my patients with control their asthma. If you give him a low dose of a beta blocker, their breathing gets better, not worse. It’s only then when there is acute asthma flare up that you don’t want to use propranolol. That’s non-core this selective beta blockers are important as well. You want to use beta blocker over Xanax. Some people they come to me, they’re already on Xanax or Adavan or value. And it’s helping them of course, because benzodiazepines also decrease sympathetic overactivity. But I would rather you take a beta blocker at the right dose, the right kind. Don’t be discouraged. If your doctor gave you a Metoprolol 25 milligrams twice a day, like they give to heart patients or hypertensive patients. And you felt very bad. That doesn’t mean you can’t take it. He just means the dose was too high, or it was not the right kind of beta blocker for you.
(01:28:11):
So there’s a few more questions, but I know we’re short of time. I’m going to be one more. That’s a really important question. Chest pain, so many patients experienced chest pain or discomfort of various types. And I always talk about the idea that there’s what we thought pre COVID and what we have to find out post COVID. Is that is there a possible neurologic link for chest pain? Like once your cardiac system has been ruled out, is there a neurologic aspect to this?
(01:28:46):
I am glad you make that important point that in the covert era, you absolutely need to make sure that your heart, the spine, whatever that means, you know, does that mean heart is fine right now we’re identifying the cards come. Our eye tells
(01:29:02):
Us otherwise, but let’s assume that all of the cards, if tests and negative, let’s assume that your traponin isn’t showing card damage, your BNP, everything is negative. Yes. Chest pain can be from dysautonomia. I have those patients. You also got to make sure that it’s not costochondritis obviously, cause a lot of young women will have this pain right here and this, they call it chest pain. But obviously it’s musculoskeletal. You also need to be sure that it’s not guard. You can have this burning pain discomfort, but let’s assume none of it. That’s true. The patient doesn’t have any conditions. Yes. You can have chest pain from this certain Nomia and there again, just like all other symptoms, hydration, beta blockers can be very helpful. Beta blockers. Sometimes you need to use calcium channel block. Sometimes we do use it mostly. Yeah.
(01:29:59):
What’s the mechanism though. What’s the mechanism that a calcium channel blocker is going to work.
(01:30:04):
Maybe vasospastic maybe, but calcium channel blocker relaxes the blood vessels and also slows down the heart rate as well.
(01:30:16):
I’m glad you said all these things over the last 90 minutes, because if you didn’t, I was gonna say the exact same things. But but I want to say, first of all, thank you so much. This was not only fascinating, like beyond belief, I’m calling your office tomorrow to book you again in like two weeks or as soon as I don’t think I’m, I don’t mean any disrespect to anybody who we’ve ever had before. And I don’t think I’m speaking out of school. And I think when I say, I think you’re the smartest person I’ve ever spoken to. You’ve just, I mean, you’ve just really illuminated so many things that are not even remotely in the, in the conversation of the thousand conversations I’ve heard about COVID so far. So thank you so much. I mean, really, I feel chills, chest pain, lightheaded, dizzy, all from this webinar.
(01:31:14):
And I mean, I really it’s probably the red bull. But I mean, this was fascinating and I we’re going to get this transcribed and we’re going to make this available to people. And we’re going to just give you a list to take to your doctors because we don’t need anybody besides you. I just want to unmute everybody so that we can properly Beth, if we could unmute everybody, I don’t have that control anymore. Okay. So we, we cannot allow participants to rename themselves. All right. Anyway, we’re going to do this as interpretive dance. We won’t be able to hear it, but everybody, I just want to say that this was, this was the webinar to end all webinars. So thank you so much. [inaudible]
(01:32:14):
Magnificent. Magnificent. Thank you so much. That’s super exciting. Have a great night everybody. Thank you. Thank you. It’s the best I’ve heard. Fantastic. Wonderful, incredible, wonderful. Very informative. Thank you. And you said you’re 21 years old, dr. Blitzstein. How did you, do you know what? That means? Everything, whatever you said before. I don’t care, but this one, yes. Thank you so much. That was really the most, the most illuminating information I’ve gotten in. I it’s like everything I’ve heard so far. So really thank you so much. I’m glad that was, I’ll see you soon. Have a good day. I think there’s going to be a bus caravan to Buffalo soon. So then how am I going to do, and I’m going to one of those. If we do it live, we’ll do it live. So we’ll do it. Like we’ll do it like the carnival guests, your weight or your age. I’m going to guess that this autonomic symptoms have a great evening. Everybody. Thank you so much for showing up.
(01:34:30):
Love you.