Peter C. Rowe - Managing Life with Autonomic Symptoms

so my name is Peter Rowe I work across town at Johns Hopkins at the Children's Center and Laura asked me to talk today about managing life with autonomic symptoms so I know just to say that we'll be talking about a number of medications today most of the medications that we use for autonomic problems have not been formally studied but there's usually a good theory behind their use you heard earlier today I think from dr. Raj perhaps about a study that Inga Devon delay did in Belgium where she used a questionnaire to come up with a variety of the Audient autonomic symptoms that are more common in people with EDS and look at the right-hand side of this slide and you'll see people with hyper mobile type EDS compared to healthy individuals on a variety of different domains of autonomic dysfunction the first is orthostatic intolerance and you can see that that one towers above the others then it reflex syncope a variety of other things the GI symptoms are also common I thought in the time we have today I'd focus on the thing I know most about and that is the most common and that's the orthostatic intolerance component so for those who haven't been immersed in the medical jargon orthostatic just means upright and it's not that people are totally intolerant of being upright obviously that wouldn't be very compatible with normal life but it refers to a group of conditions in which symptoms will worsen with quiet upright posture and that can be sitting or standing and they usually improve to some degree when the person lies back down and the the focus here is that there's a group of these conditions not just pots as I'm gonna show later this is a cartoon from a text book by Philip Lowe one of the main leaders in autonomic dysfunction in the United States he's at the Mayo Clinic and it's meant to show that when you move from a supine position to an to standing the big thing that we have to accommodate is that blood shifts by gravity so you lose about 500 to 750 milliliters of blood volume into the lower half of the body the cartoon isn't very accurate with regard to how much blood actually pools in the belly but it shows you that the veins in the lower part of the body are more distended anything that's hanging down below the level of the heart gets more of the blood and the normal response to that is that you're getting less blood going to the head and neck the brain doesn't like that it stimulates the autonomic nervous system to speed up the heart rate and to cause blood vessels in the lower half of the body to constrict that should send blood back up to the heart and brain and usually you see about a 10 to 20 beat increase in heart rate when an the healthy individual is standing when that doesn't that reflex pathway doesn't work efficiently you get these symptoms of orthostatic intolerance and they're quite numerous the ones on the left we think are mainly caused by a reduction in brain blood flow so that's lightheadedness syncope or fainting diminished concentration and some of the other features that many of you term brain fog headache blurred vision and in every form of orthostatic intolerance that I've read about and seen there's a much higher prevalence of fatigue and exercise intolerance than you would expect by chance the symptoms on the other side are thought to be in part related to the massive increase in epinephrine and norepinephrine that occurs as the as the nervous system tries to respond to blood being dislocated into the leg dis Nia is the medical term for shortness of breath and there's a orthostatic shortness of breath that seems to get triggered when there's a critical reduction in the amount of blood flow to the brain so people then start taking deeper and more rapid breaths that then sucks blood up from the legs into the chest cavity but it has a negative effect on brain blood flow because the brains when you're hyperventilating will constrict the blood vessels so if you keep doing this you'll get much more lightheaded and feel more uncomfortable and it'll look to a physician or a health provider like you're having a panic attack which is distinctly different from this orthostatic shortness of breath chest pain is very common in these conditions palpitations or skips beats are common there's a often some tremulousness and shakiness anxieties sometimes triggered we know for example that in an experimental setting we can make people have a panic attack if we give them too much medication that's in the epinephrine family here's a situation where you're generating your own boost in epinephrine simply to get blood flow to your brain so it's not surprising that anxiety is a bit more common you can see other symptoms like nausea as well so when we're taking the history in the clinic there are a number of things that we'll ask especially the younger patients one is how long can you stand before you feel unwell because not all of the younger patients will recognize what lightheadedness represents lightheadedness is probably the most common of the orthostatic symptoms we want to know about situations where they're standing still so how do they feel when they're waiting in line at any kind of cocktail party or reception if they're singing in the chorus or in the band and have to stand for long period of time or at a religious service that's often where these symptoms will arise certainly heat is a big problem for people with orthostatic intolerance and they do much worse if they're in hot weather if they take a really hot shower or go to the sauna or if it's a really hot day or just if the room is overheated we ask them if they feel light-headed or unwell if they stand for more than a few minutes and then there's another way you can detect this problem at least from a physician standpoint and that is that patients will adopt without knowing why a number of postures that help them get blood out of their legs and up to the heart and brain so many of them will study in a reclining position they'll sit with their knees to the chest and I've had a number of occasions in clinic where the patient is sitting there both knees up to the chest and as I'm explaining that they have orthostatic intolerance I'll say you know this is very helpful to you because it squeezes the blood out of your legs and and to some extent out of the abdomen so your preferred sitting position will be knees to chest and that usually the young girl looks over at the parents with a glare and says see I told you because there's been inevitably a fight about the proper way to sit at the dinner table many people fidget and shift their weight I had one example of a young woman from the suburbs of Baltimore who was well enough to play volleyball and she would be fine if she was in motion when the coach would call a timeout and they'd have a huddle they would allow her to pace around the group and stay in motion like a caged tiger and she did they didn't know why she was doing it nor did she but I think it was to keep blood moving and circulating okay so you heard this morning from dr. Raja about pots we define that differently in adolescents than in adults you need a 40 beat increase in the heart rate between when you're supine and when you standing over the 10 minutes you have to have chronic orthostatic symptoms and you can't also have a big drop in blood pressure in the first three minutes upright that's referred to as orthostatic hypotension so here's an example of somebody that we tested in the clinic with a simple standing test not everybody needs a formal tilt table test to make this diagnosis and I think the standing tests are much much more available in the regular practice but orthostatic intolerance is more than just pots one of the other features that we first described in in patients with chronic fatigue syndrome and in EDS in the 1990s is called neroli mediated hypotension meaning through the nerves it's a reflex pathway usually responsible for what's called vasovagal syncope or the most common cause of fainting but we were finding that these were patients who also had all of the other orthostatic features that you see with pots but didn't have a big increase in heart rate on the tilt test so those with new early mediated hypertension can have the same range of symptoms they have a very different pattern on the tilt here's somebody who was actually just standing didn't meet the pots criteria the heart rate only went up 27 instead of 40 with standing symptoms came on lightheadedness trouble thinking and concentrating and then as you can see at the six minute point the blood pressure numbers in blue really plummeted and normally if you have a drop in blood pressure you should have a compensatory increase in heart rate that's what we would see in somebody who's getting a blood stream infection for example who was really dehydrated however the classic heart rate response in nmh is for the heart rate to drop and sometimes it can drop so much that we see a cessation of heart rate for a few minutes in the tilt lab that the patient always recovers from that helped along I think by the increase in heart rate of the doctors in the room at the time all right this slide is really meant to summarize a lot of the physiologic research that's out there and it points to the fact that in everybody that we think has pots and and many with nearly mediated hypotension there's a defect in their ability to get blood back up from the legs so they don't vasoconstrict the vessels don't constrict and push the blood back up efficiently we're not always sure why but it leads to an increase of pooling of blood in the limbs the second phenomenon that is usually present is a reduction in the amount of intravascular or blood volume so when people measure this formally it's usually about a 10 to 15 percent reduction it's symmetrical in that the plasma and the red blood cells are equally reduced so you don't see an anemia or concentrated hemoglobin but with those two phenomena when people stand there is also this increase in the sympathy adrenal response sympathetic nervous system and adrenal gland responds it's it's been hypothesized that if you have more norepinephrine released from the nerve terminals than epinephrine that you're able to better maintain your blood pressure and so the pattern that you'll get is more of a Potts pattern if you have more epinephrine and norepinephrine the epinephrine can cause some dilation of the skeletal muscle vessels and that leads to more of a greater likelihood of dropping the blood pressure in the literature you often hear these two phenomena described as being completely different and incompatible with one another I think it's becoming better recognized that you can have pots in the first 10 minutes upright and eventually develop syncope if you keep standing so I think of them more along a spectrum of disorders one of the things that many of you are going to be familiar with is the change in the color of the limbs when you're standing it's called dependent acrocyanosis cyanosis is the medical term for a purple discoloration and this is a young woman who had had to stop her college education because of the degree of fatigue and lightheadedness and that's her hand on the left with my hand behind it as a contrast after about three minutes upright on the other panel you see her legs and I don't know if you can see it from the back but I've taken my fingers pressed them on her skin to do something we call a capillary refill test usually you want to see blood returning to the area you've compressed within a couple of seconds the longer the delay the more likely that patient is to have very poor circulation well what we did here was I stood there pressed her leg step back picked up a phone tried to find the camera icon fiddled with it a bit and as my son will tell you I'm not very good with these devices so this was about six seven eight seconds later and she still had no capillary refill so we look very carefully for the pattern of discoloration in the dependent limbs when people are in the clinic so the treatment I want to spend a lot of the rest of the talk on the treatment of orthostatic intolerance to give you a sense of what you might be coming up with and meeting in the doctor's office big part of this as pediatricians we want to make sure we've given a good explanation and demystified the problem for our patients we don't want them for example never getting up just because they get lightheaded when they change posture I think regular visits are really important for clinical monitoring and it's fiddly this the treatment of these disorders takes a lot of trial and error our job is also to provide some guidance about new treatments that come along and especially to help with the schooling accommodations so people need permission to carry a bottle of water around and proof to the principle that it's not got any gin or vodka in it they need extra time usually with with tests flexibility with assignment deadlines and some need home and Hospital schooling or home home tuitions and there are a few patients who just don't have the brainpower but at the time due to their symptoms the fogginess to really make take any advantage of the home tutoring so think about the orthostatic intolerance treatment as a number of steps they don't have to be separate all the time the first refers to some nonpharmacologic medic measures the second step that I think is left out of a lot of guidelines is that you've got to treat the other conditions that are present and the third looks at the medications specifically for orthostatic intolerance we always try to begin with mono therapy meaning a single drug therapy but it's very uncommon to be that successful with just one medication we often have to combine them which is what I call rational poly therapy poly therapy has gets a bad name in the medical system but if in fact it's often needed for these conditions okay so this is the the factor in the clinic I tell the kids where possible avoid the factors that participate your symptoms so let's look at the diagram again if we're thinking about things that increase the amount of blood pooling in the limbs and that decrease intravascular volume and that aggravate the sympathy adrenal system let's look at those so the precipitating factors that involve increased pooling and decreased blood volume are shown here so obviously you want to try and avoid prolonged quiet sitting and standing so how can you do that practical thing is make sure you're shifting around getting up and moving if you're in class taking breaks if you're studying just getting blood circulating there are some tricks also with sitting that I'll show you in a bit that might be helpful if you're sitting at a desk for I'm withstanding you want to try and move around shift your weight and also avoid going to a place where you have to be in line you know don't shop for groceries at the peak time go if you can later in the evening or or earlier in the day when others are less likely to be there you want to avoid really warm environments and I'll show you some ways to do that later it's very important to avoid sodium depletion we've seen patients who have orthostatic intolerance just because the family was unfortunately following medical advice the kind that you'll hear from the National Heart Lung and Blood Institute which is that everyone should try to cut down on sodium that is great advice if you're living in the 1940s and that's all you've got for treating high blood pressure but today it makes a certain part of the population the people who are in the bottom quartile of the blood pressure distribution sicker so it's really poor advice delivered to everyone our patients really need much more sodium will talk about prolonged bed rest and deconditioning those can certainly make orthostatic intolerance worse the challenge when you're really fatigued and you have problems with mobility is how do you manage to avoid the deconditioning and that's a that's something that needs to be done individually and our physical therapy colleagues can help with that varicose veins are occasionally a problem that's another source of blood pooling higher carbohydrate meals seem to shunt more blood to the abdominal cavity after you've eaten them compared to higher protein meals people need to sort out whether that's a big factor for them or not and then there a variety of drugs that we can administer that make blood vessels dilate so that there's increased pooling common ones that you might deal with if you've got a lot of GI symptoms are things like compazine and phenergan those can really lower blood pressure by lowering blood pooling or increasing blood pooling and then alcohol as we all know will cause some facial flushing and increased urination so if you're shifting blood flow to the skin that's not helpful to getting it to the heart and up to the brain and if you're urinating more that loses blood volume as well so those are a few of the precipitating factors for in that category and then when we look at the increases in epinephrine and norepinephrine there and the catecholamine family these are things that we all encounter right stress we want people to exercise pain will drive up your catecholamine levels as will a drop in blood sugar or hypoglycemia and then one that's often not appreciated by everybody in medicine is that if you're using albuterol as part of your asthma treatment as a puffer that is something that's kind of in the family of the the epinephrine and it will make many patients who have orthostatic intolerance and very shaky and tremulous I had a patient come to see me not too long ago who would take her puffer before starting off on our cross-country run and she would then get blackouts of her vision just a few minutes after the the puffer so we had to change her to something that didn't add catecholamines to the mix all right on to other non pharmacologic measures this is a slide from an old paper from the 1940s where they were dealing with orthostatic tachycardia and hypotension and they came up with a regimen that included 16 grams of sodium per day that would give most cardiologists I know a heart attack and they managed these folks with raising the head of the bed so this had a curious effect of reducing the amount of urine they produced overnight they didn't pee as much so they had more blood volume left in the in the morning when they got up so this can be effective you can see in this slide that this guy was up on a couple of hospital chairs and those of you in the front will see that he had a little part of the mattress rolled up as a as a hip stop this technique I'll warn you doesn't work with silk pajamas and it isn't everybody's cup of tea but it has been restarted by a group in the Netherlands not too long ago and they confirmed that this was helpful for some patients compression garments I every time I bring this slide up I think gosh I've gone hoarse trying to get adolescents to wear compression garments especially the stockings but I'll just mention that the these can be helpful the the better ones are the ones that are more easy to use or in the twenty to thirty millimeter of mercury range those are better tolerated and easier to get on and off than the thirty to forty millimeter ones the waist-high ones the area you cover is is key so the waist high ones work better than the thigh highs and the thigh highs work better than the knee highs but as I was explaining this whole concept of compressing the vessels from the outside to one of the adolescent girls a few years ago she was thinking about it and you could see a light go on in her face and she says you mean Spanx and I said what's a Spanx I've since learned so let me show you a few of these the the the type of body shape or garments that work best are the ones that are going from the bottom of the ribcage to the top of the thigh the Spanx people don't care about really good compression in the lower leg that's not part of what they're doing with their product but for the midsection this can be really helpful the woman sitting on the stool is wearing some jokes ultra sheer stockings so they don't have to look like your grandmother's pink compression garments the ones at the bottom in the middle are our bauerfeind stockings a lot of the compression garments that are used by triathletes and marathoners and and others in sports are a bit more stylish so the ones on the bottom right are actually compression garments used by athletes to recover and our patients can use them just day-to-day and the top right is a ten-dollar thing that you can find on an amazon search that's just an abdominal binder and I've had some patients find that this is really helpful for them if they're able to play sports but they get too dizzy if they're running around too much some kind of abdominal compression can be helpful talked about the heat earlier and among the things that are available to you you can't change the baltimore temperature obviously but you can change your response to it and these are some pictures from the from the websites that i've listed on the slide of different scarves that you can dunk in ice water there are packs that you can freeze and as I was coming in here today I met my colleagues at the Kyary serene burma alia foundation table and they have one of these cooling packs that you can freeze available to people if you sign up for their Kyary register so just a plug for them the cooling beanie that you see there is from the m/s cooling site for multiple sclerosis patients with MS often are very temperature intolerant so you can look their website for some very good ideas about other cooling garments some people find that sleeping with that kind of a cooling garment really helps them with their sleep hygiene then this is where it gets a bit more difficult to get kids to wear these things but these are vests that have little pockets inside for ice packets they were designed I think in the first place for people who work in really hot environments firefighters people who really get a lot of thermal stress in their workplace most people don't want to go around with something that's fluorescent green and look like a road crew worker but if you really have tremendous difficulty outside in the heat this is one way to extend your time up right I have a few patients for whom they're not willing to make that fashion faux pas to go out with one of these on but they have it in the house so that when they come in they put that on and then their heart rate comes down much more rapidly among the postural counter manoeuvres so you guys probably use many of these on your own without knowing why the girl in the picture is standing with her legs crossed and she has one other advantage can anyone see what that is that's how you couldn't hear yeah she may have those on I think those might be her boots but the other thing that she's got is an increase in the heel and her shoe and many of our physical therapy colleagues find that that takes a bit of neural strain off the nerves in the lower limb but it also makes you stand and your calves are more engaged and contracting I'm not gonna recommend stiletto heels for people with orthostatic intolerance but a little bit of a heel sometimes makes a difference we talked about the knee chest position leaning forward when you're sitting like you would as if you're leaning over a grocery cart that's another technique in the stores that can help and then the other technique for when you're seated is to get your knees higher than your hips using some small stool or a couple of books or your book bag or your knapsack that does something to raise blood pressure and help maintain the amount of time that you're upright and doing well but the general message is we want to use them muscles especially in the lower limbs as a pump I left out the clenching the fists when you stand up that's been studied as another technique to get blood out of the arms the problem with doing that in school is you might be corralled by the teacher for impending violence this shows a couple of the patients from the clinic and their favorite postures tucking the the foot under the bottom when you're driving is a favorite one of some patients and some will drive their automatic with their left foot up on the dashboard an unusual position but I'd rather them not be lightheaded the point about the the lower the chair is the better the blood pressure control is is illustrated in this slide that was given to me by Arthur Schmitz from the Netherlands a long time ago he had a fin oppressor finger blood pressure device on this individuals finger as she went from supine to standing and you can see the increase in her blood pressure as she crosses her legs and then in the other two slides that on the far right is the lower stool so her knees are a bit higher and that does a better job of maintaining blood pressure when she's seated a lot of emphasis is given to the fluid intake it's really key to drink at least 2 liters a day but you can get really nauseated if you're drinking 5 litres a day so you've got to find the balance that's right for you I would estimate that most of my patients are managing better with about 2 and a half to 3 liters a day I want them drinking something every couple of hours so they need access to fluids at school they can't just guzzle a lot before school and guzzle a lot after it's just not gonna work well we also want people to avoid sleeping for more than 12 hours a day if you're going that long you're really getting yourself dehydrated so we ask the parents to wake the kids up after that amount of time hydrate them get them moving around a bit they can go back to bed and nap later if they've got tremendous somnolence but we don't want them going more than 12 hours without without fluids salt intake we suggest increasing the salt amount according to taste and you can supplement that with these salt tablets bite aciem packets were in your bags today thermo tabs is another one and I'll just show you on the next slide some of the oral rehydration products that have come along in the last little while one is called liquid IV all of them give you much more sodium intake than you'd get from something like Gatorade liquid IV was I think invented by people who wanted to sell it to college students who'd over indulge the night before as a way of not having to go to the ER but they spent a lot of time apparently doing the taste testing of this product more that say then some other groups have done and a number of our patients are finding that this is quite helpful to them the one on the top left is called try oral that's an electrolyte packet that's very similar to the World Health Organization electrolyte composition that they give to people with cholera and at the bottom is a local company seer light that is based in Anne Arundel County just south of here and their product was was put together by in collaboration with some folks at the Hopkins School of Public Health exercise is another key issue we want people to avoid prolonged sleeping like I mentioned but if you're really impaired at the beginning and really fatigued and really lightheaded you've got to begin slowly and increase very gradually and in a flexible manner there's no one protocol that works for everybody we think recumbent exercise can be helpful in the beginning and just want to warn people about really rigid advancements of graded exercise our colleagues in physical therapy here Rick viola and and and others have found that if they take care of a number of the movement restrictions that people have the stiffness they might have in the thorax some postural problems then that can help people to then tolerate exercise better but complete inactivity is the enemy it's clear that inactivity can aggravate orthostatic intolerance but I also want to make sure people know it's incorrect to view this as the the whole problem is exclusively due to deconditioning here's the the slide that really makes the point this is a study done by people at NASA they were trying to investigate why astronauts when they came back to Earth's environment were so likely to faint and have problems with just remaining upright so they did this study and you can see at the bottom it says bed rest up to 220 days this was complete bed rest I think it was done in the days before ethics review boards or or it was just with astronaut training people but anyway the point is that in the first two to three weeks of complete bed rest you lose about 15% of your blood volume that can be reduced if you do some biking in bed so even a tiny amount of physical activity helps with reversing this but it's really key to avoid complete bed rest HL Mencken who is a Baltimore journalist about a hundred years ago said for every complex problem there's a solution that simple neat and wrong and on the right you see Michelle Akers who had very poor very difficult time with orthostatic intolerance even when she was playing at a very high level on the US Women's World Cup team and and was at one point the FIFA Player of the Year even when she was functioning at about 50% she could beat most other soccer players but she was certainly not deconditioned right she had to have been an absolute top physical shape but still had orthostatic intolerance so it's not always due to deconditioning then you want to treat the contributor tori conditions in this situation and this is a sample of a slide I often use in the clinic showing that orthostatic intolerance can be affected by a lot of things some of which you've heard about today like mast cell activation syndrome some of the allergic problems the GI problems it can also contribute to GI motility difficulties but there's a whole range of things that that we want to look at to make sure people we've got the best chance of getting a good bang for the buck from the medications then if we look at the medications and we go back to our guideline about what's really going wrong in this kind of condition we want to try and address the problem with vasoconstriction with better vasoconstrictor drugs we want to improve blood volume with volume expanders and we want to block the sympathy adrenal response so how do we do that so the vasoconstrictors that are available to us are shown on this slide my deterrent is one many of you probably know it will give you a bit of a tingly scalp and a goose bump feeling it doesn't work for everybody but it can be very helpful for some and then a very good class of agents that work as vasoconstrictors are the stimulants that we typically use for attention deficit disorder so ritalin dexedrine those kind of group the serotonin reuptake inhibitors things like zoloft prozac lexapro or the SNR eyes like cymbalta and effects are all can have some effect on vasoconstriction so if you've got somebody who's got prominent anxiety or depression those might be good options off the off the bat volume expanders include the sodium we talked about that can be given orally or intravenously if nothing else is working and we use that judiciously but but more than the number of patients who get weekly infusions some who need it a couple of times a week the most commonly used drug for expanding blood volume is fludrocortisone or Flor Neff clonidine seems like it doesn't belong here but because it's an antihypertensive but it has the effect on those with low blood pressure of sometimes improving blood volume and that was work from dr. Raj's boss at Vanderbilt birth control pills can also improve blood volume as can desmopressin that drug that we use for children with bedwetting and then the drugs that will drop heart rate are the beta blockers a newer one of Aberdeen and peridot stigman bromide or messed it on so managing these problems requires a lot of attention by the patient to figure out which things trigger symptoms and requires a willingness I think I heard Shanee talking about willingness to try a number of different medications before you find a good fit and a realization that we can treat the symptoms as much as we do with asthma but we aren't necessarily going to cure the problem and then I think because there are so many other things that will interact with the autonomic nervous system and diseases that can make orthostatic intolerance worse you've got to make it part of a comprehensive program one more lesson the normal tolerance of exercises the goal obviously need ES and so rather than getting people to exercise their way to better orthostatic control we think the opposite is usually needed that is we have to support the circulation to enable people to tolerate the greater increases in exercise that will get them healthier here's an example this is a 22 year old from my clinic who developed chronic fatigue syndrome after a CMV infection when she was 14 she had a bunch of problems by the time I saw her including joint laxity hypothyroidism Raynaud's phenomenon depression which had emerged after she'd really been impaired for a couple of years migraines and some tightness on her physical therapy exam she plowed her way through high school went to college really mostly on fumes we couldn't find anything to help her headaches she got a little bit of benefit from salt tablets and and fluids and from some compression garments but most of our orthostatic intolerance remedies were not helping her and what would happen was she had a resting heart rate of over a hundred sometimes up to 140 just sitting there and within two or three minutes of trying to exercise the heart rate would shoot up to 180 and that would trigger a migraine so we finally found of Aberdeen which came on the market a couple of years ago and noticed that as we bumped up her dose shown on the left her resting heart rate started to come down now down to 72 and her exercise heart rate normalized and she wasn't anymore triggering a headache so with that drug she was then able to tolerate exercise and now can do sort of 30 to 40 minutes on the elliptical one of my favorite slides is the postcard she sent me where she did 10 miles of hiking in one day in Sedona now she's working out in Arizona currently and she wrote me last week to say that there had been a period where shoes off the of Aberdeen for five days through their insurance problems and again going back to this issue of deconditioning you'd think she was perfectly fit if she can hike 10 miles in a day and do 40 minutes on the elliptical four or five times a week well she says the result was what we would have expected I worked out at a low steady level heart rate 158 to 163 instead of her usual 130 on the drug couldn't get it to come down it triggered an migraine and the next day after two doses the same with the same exercise the heart rate was back down again she said I think we can safely say that the core Lenore is doing its job so I'm going to end there but I want you to have a couple of resources I did a webinar a few years ago for the sea foods Association of America as it was known at the time that's available if you search under dr. Peter Rowe on YouTube my caution is that if you just search under the name without the doctor you get the guy who was the director of the old movie the Little Shop of Horrors which many that's the name many of my colleagues give to my clinic you probably know about dysautonomia international they have a number of talks on these kinds of things the brochure in your in your packet today about the group that does webinars look I think it's explained pain or chronic pain they have webinars on this these topics as well something that might be helpful is an open-access monograph that a number of us put together and published last year it's a it's a handout on myalgic encephalomyelitis and chronic fatigue syndrome but it has a long section on orthostatic intolerance and for many with EDS there's a huge overlap in the symptoms so that might be helpful to you as well these are some of the web addresses you know about the EDS society and there are a couple of the chronic fatigue syndrome groups that have useful information and then just wanted to thank those who have made our work possible in the last 25 years working on chronic fatigue syndrome EDS and these orthostatic disorders so I think we're gonna have questions later today I'll stop there thanks very much you

Channel: The Ehlers-Danlos Society

Views: 22,479

Rating: 4.8767967 out of 5

Keywords: dysautonomia, POTS, postural orthostatic, Ehlers, Danlos, hypermobility

Id: BEfRp8OqI5o

Length: 42min 13sec (2533 seconds)

Published: Sun Oct 14 2018