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Steven

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  1. @Scout - For plasma catecholamines testing the best bet would be a larger hospital in a capital city. If you have a particular hospital in mind you might be able to find plasma catecholamines testing listed somewhere in the pathology part of the website for the hospital or state health department. Just to give you an idea of what to expect, you might be put on a waiting list about a year long to get a consultation to assess you for testing - then possibly put on a further waiting list for the actual testing - unless you can get a doctor, preferrably a specialist, to push for you to be tested sooner. I'm currently on a waiting list for a consultation at the Austin Hospital in Melbourne. Plasma catecholamines supposedly have a half life of about two minutes, meaning that processing of the blood samples needs to be done by a skilled lab technician right after the samples are taken. If you live outside a capital city, hospitals or medical centres in the local area might have decided it's too hard for them to offer it, like Tasmania has. You might need to explain the difference between supine and standing plasma catecholamines versus 24 hour urine catecholamines, and deal with a doctor whose attitude is that 24 hour urine catecholamines is good enough. Where in Australia are you? In my research online I've only really come across the names of a few doctors per state who deal with dysautonomia/POTS conditions. I think you'll find that the vast majority of doctors in Australia won't know what you're talking about if you say dysautonomia. They might have a vague idea if you say autonomic dysfunction. A cardiologist might have heard of POTS but their knowledge will probably be fairly limited to the tachycardia part of that. Whatever state you're in, I think you'll find that when people insist on investigating dysautonomia/POTS a doctor will likely Google it and refer the person to one of the few doctors that show up in that state, or the nearest other state, for the search term they use, so people get funnelled toward a very small number of doctors per state for these types of conditions. They aren't necessarily the best doctors - just the ones who started showing up in Google results for the relevant search terms. The snowball effect of this small number of doctors getting more referrals for these types of conditions leads to more people mentioning them online in relation to these conditions, which further entrenches them in the relevant search engine results, which leads to more referrals. I come across the same few doctors in Australia over and over but I don't necessarily hear of many people getting great results. Someone might say something like the doctor was nice and helped them get hold of a medication they had trouble getting elsewhere or that the doctor was knowledgeable about what symptoms dysautonomia patients present with (because patients statewide get funnelled to them), but I don't really come across people in Australia saying that a doctor had a rigorous scientific approach, promptly got them the testing they needed to identify the biological mechanisms involved, came up with an effective treatment/management plan, followed up with a competent assessment of how the treatment/management was going etc. If you type the name of your state or capital city into the search bar at the top-right of the page you should be able to find the names of the few doctors associated with dysautonomia and POTS in your state capital.
  2. Hi @Scout. The 24 hour urine test is useful for diagnosing tumours but it's not the right test for diagnosing hyperadrenergic POTS. The catecholamines testing used for diagnosing hyperadrenergic POTS is testing the levels of catecholamines in blood plasma, taken lying down then taken again standing up or tilted to an upright position. The testing is typically known as "supine and standing plasma catecholamines". It might require visiting a hospital in a large city. I live in a small state in Australia and have to go interstate for it.
  3. I picked up the report from the 24-hour Holter monitor today. There's a lot of heart rate variability, ranging between 37 and 156 bpm, with 13 hours, 42 minutes and 44 seconds of bradycardia and 1 hour, 50 minutes and 16 seconds of tachycardia, according to the report. The most strenuous physical activity in the relevant 24 hour timeframe was walking to the bus stop or to and from the nearby shop to get a couple of small items. Unsurprisingly, given my experiences with my state's health care system, the cardiologist's "interpretation" was just a summary of the computer-generated report, with no actual interpretation. I found two obvious inconsistencies with data reported on the first page and data displayed in graphs and tables on subsequent pages. On top of that, a page of the report was missing, based on the page numbering, which goes from "Page 1 of 6" to "Page 3 of 6". There are also sections on the first page for QT Analysis and for ST Episode Analysis which have no data entered. Things I had discussed with both the receptionist(/nurse?) who put the Holter monitor on and the one who took it off were ignored or not communicated to the cardiologist. The computer-generated report gives me some extra data, but the limited info provided in the printed report significantly reduces its usefulness. Given the two obvious inconsistencies I picked up, there could also be further errors, beyond just the limitations of the technology, that I don't have the necessary info to identify. This is yet another disappointing but not surprising experience with the health care system in my state (Tasmania, Australia). It's unclear whether the Holter monitor results will be enough to help upgrade my priority level for getting autonomic testing.
  4. The short answer is that muscular symptoms have been associated with POTS, and with dysautonomia in general, and you don't necessarily have to be concerned that you have something in addition to POTS. There are other possible causes of muscular symptoms, such as high or low calcium levels (vitamin D deficiency is a fairly common finding in people with POTS/dysautonomia, which has an effect on calcium absorption) or an electrolyte imbalance, each of which could have an easy solution, so it would be worth checking out other possible causes. I discussed the topic with someone recently. You could type something like twitch, twitching, muscle or muscular into the search box at the top right of the page and you should see plenty of examples of POTS/dysautonomia people with muscular symptoms, along with discussion of other possible causes and treatable POTS/dysautonomia related causes.
  5. I can relate to a lot of what you described, but for me episodes don't come in a two-stage pattern. I get episodes of chest pains and discomfort. Numerous ECGs have turned up ST elevation and partial right bundle branch block, and ECGs here and there have picked up other features. My blood pressure cuff turns up abnormal beats somewhat frequently. I also came across Prinzmetal's angina and microvascular angina in my search for possible explanations for chest pains and discomfort. I'm seeing my doctor in a few days to get results from a 24-hour Holter monitor. I've had plenty of other tests over the past few years. Australia is also pretty bad when it comes to investigating this sort of stuff and getting a proper diagnosis. I also get the symptoms you described in your phase two section. (Sense of body position is known as proprioception, in case that helps with finding info on it.) Have you looked into whether you meet the diagnostic criteria for a specific category of dysautonomia, such as POTS or orthostatic hypotension - as well as having general dysautonomia symptoms? (I meet the diagnostic criteria for POTS.) Various people on here have brought up chest pains but, from what I've read, they typically don't get satisfactory answers about why it happens, or how to prevent it or treat it. You can type chest pain in the search box at the top right of the page to see what others have written.
  6. I had a look at the website, especially the page titled 'How The Program Works'. I saw a lot of buzz words and marketing talk but little in terms of science. The 'How The Program Works' page can be distilled to two sentences, stripped back to their meaningful content: "This [...] behavioural intervention [...] focuses on the training of [...] skills including attention focusing, attention distraction, cognitive reappraisal, emotional distancing and emotion regulation." "This [...] shifts the brain and body from a chronic sympathetic response associated with the fight or flight state into a parasympathetic state [...]." I would avoid it. Unless you are looking for techniques for managing anxiety/emotional-stress, this program doesn't seem to have much to offer. Even if you are looking for such techniques, plenty of info on this is widely available for free online.
  7. One doctor has described some of my symptoms as possible Raynaud's Phenomenon, but perhaps pallour or circulation issues would be a more appropriate term. I get pale skin, especially in cooler temperatures, and I can get a red, purple or mottled appearance that tends to be more temporary or changing in nature. I also get cold hands and feet, and numbness and tingling at times. If you do a Google image search for Raynaud's Phenomenon you will see images of hands and feet that average people would quickly say are clearly a medical condition. My symptoms in this area are within a more normal range of what healthy people would have experienced at times, but probably at significantly colder temperatures or when they were sick. You wrote that you take two medications for Raynaud's Phenomenon and one for hypersomnia. Do you mind sharing what those are and if they have actually helped? Tiredness or reduced alertness during the day is a persistent issue for me, even after plenty of sleep the night before or with drinking caffeinated drinks. When I try to find anything to address this, the solutions involve peripheral vasoconstriction to increase blood pressure so more blood will reach the brain - along with warnings for people who have an existing issue with peripheral circulation.
  8. That's great that you'll soon have autonomic testing results from Vanderbilt. I live in Australia where there's nowhere like Vanderbilt or the Mayo Clinic - but I've been reading textbooks and articles, watching talks etc. from leading people at those places. I've already established that there's only limited testing available in my state, so I'm currently following up on an interstate referral, as well as a local cardiology referral (even if only for them to provide further official confirmation that my state can't offer testing that I need), while trying to establish who offers what where and how to access it. For the interstate referral, I got a letter last month informing me there's an expected wait time of approximately 9-12 months for an initial consultation to discuss arranging testing. My GP arranged the Holter monitor, but it seems it'll be another month or more before I actually get to speak to a cardiologist unless something in the Holter monitor results is considered to be urgent. I'll share some details about my Holter results on here in the next week or two. The more people share details online the easier it will be for other people to get the info they want when they search for it. Maybe the Holter results will turn up something that can cut the wait time for autonomic testing. If there's anything confusing in your results from Vanderbilt, I have textbooks which contain extensive detail on the kinds of tests you would have had (ie. what each test is designed to measure and why, the methodology used for each test and why, what data looks like for healthy people and for real case study patients with a variety of conditions, limitations and pitfalls of each test etc.). There should be a range of people on here willing to share their knowledge and experiences with the tests and how the results are reported and interpreted.
  9. The typical POTS pattern is a higher than normal rise in heart rate upon standing up (a rise of 30bpm or more in the minutes after standing). There are more detailed diagnostic criteria online. Many people with POTS also have a high heart rate when lying down or sitting at rest, but some of us have a low heart rate when lying down or sitting at rest. My heart rate at is often in the 40s or 50s when lying down or sitting at rest. I also have fluctuating blood pressure and episodes of chest discomfort/pains/pressure. In colder temperatures I've noticed instances of my heart rate going from 40s lying down to 50s initially upon standing then 60s a minute later and 70s a minute after that, whereas the usual pattern for me is a larger increase initially upon standing that then drops off slightly then stays around that level (eg. 50s to 90s then stays around 80s, or 70s to 130s then stays around 120s). I don't have any easy solutions, as simply increasing or decreasing heart rate or blood pressure is not a great solution to large fluctuations. I'm trying to get autonomic testing done to look for more detail about the biological mechanisms behind the symptoms, which vary from one dysautonomia/POTS person to another. I'm also due to get a report back in a week or so for a 24 hour Holter monitor, which will give me some more detail than I get measuring with a blood pressure arm cuff at home. A broad explanation for bradycardia is an overactive parasympathetic nervous system, whereas tachycardia can similarly be explained by an overactive sympathetic nervous system. Although sympathetic overactivity is probably more commonly associated with POTS, partly because of tachycardia being used in the name and diagnostic criteria, many dysautonomia and POTS people have symptoms of parasympathetic overactivity. Normally, in a healthy person, there are constant adjustments of both to maintain a balance appropriate to continually changing circumstances, with sympathetic activity going up as parasympathetic activity goes down and vice versa. Parasympathetic overactivity can seem a lot like sympathetic underactivity and sympathetic overactivity can seem a lot like parasympathetic underactivity. So it can be difficult to work out exactly what's going on and what can be done to make it better unless autonomic testing is done to, at least partially, identify what's working as it should and what isn't. I hope that's of some help and isn't too complicated. If you haven't done so already, you could also type bradycardia into the search box at the top-right of the page and read what others have written about it in the past. There's more than a decade of previous discussion on here.
  10. If you're looking for a Greek or Latin term that doctors use, like when doctors say tachycardia instead of fast heart rate, there's not really a commonly used Greek or Latin term for cold extremities; doctors just say cold extremities or cold hands and feet (or maybe low circulation in the extremities). If you're looking for a medical condition or cause related to cold extremities, the responses above are a good place to start.
  11. Thanks for the responses. I know the cardiologist and the computer analysis won't be able to analyse the effects of posture and physical activity on heart rate changes, because they don't have data on my posture and physical activity. They don't have data on blood pressure, nor localised blood flow and oxygenation. They also don't have data on variables such as temperature, food and drinks consumed, noises or movements going on around me that could increase heart rate etc. It should at least pick up a lot of bradycardia and tachycardia, as well as sudden rises and falls that might be identified as a bit abnormal. Tachycardia might be largely written off as potential physical activity during waking hours and as waking up during sleeping hours, and therefore too inconclusive to draw any firm conclusions. Bradycardia might stand out more as something that doesn't have such an easy 'normal' explanation, since my heart rate was probably in the 40s for extended periods during waking hours in the 24 hours that the monitor was on. Then again, unless it went below 40 for an extended period during waking hours (which it probably didn't), they might write it off as 'nothing to worry about for an athletic person' (even though I've only really been able to tolerate mild exercise over the past four years). I've just been using a blood pressure cuff to measure my heart rate at home so far, so it will be interesting to see what my heart rate does when I'm walking around and when I'm sleeping. When I've had 10-second electrocardiograms done before, while lying down, the computer analysis typically gave notifications for maybe two or five features that doctors considered to be not worth investigating further. It'll be interesting to see what turns up from 24 hours that includes standing up and moving around.
  12. For those who have had a 24 hour electrocardiogram (EKG or ECG, depending where you are in the world), also known as a Holter monitor, I'm wondering what your experience was like in terms of the reported data and interpretation, especially if you meet the diagnostic criteria for POTS. Did the reported data and interpretation catch or miss key features relevant to dysautonomia and POTS? For those who don't have a separate heart condition, did it pick up much useful info or just things that got written off as 'probable normal variants'? Was the reported data and interpretation mostly focused on the wrong details for dysautonomia and POTS, or did you actually get much of use from it? I returned a 24 hour monitor yesterday and should have the report a week from now. They won't provide me a full copy of the data but will provide my doctor a report with some 10 second strips. I was told that there will be a graph of the 24 hours, which should be useful - but the limited resolution of it being printed on A4 sized paper (and not necessarily a full-page, landscape-layout graph) could limit its usefulness a lot.
  13. If the beta blocker has been helpful for you, you could look into doing something to increase blood pressure, such as increase salt and liquid intake consistently over time or take something like fludrocortisone (aka Florinef), while staying on the beta blocker. This might be a good solution if your heart rate is always high at rest, but if it's only occasionally high at rest the beta blocker could make your resting heart rate too low when it's low. A blood pressure increase from salt should be more of a gradual change, rather than an immediate boost after consuming something high in salt. That's not all that large of an increase in blood pressure from 98/62 to 110/65. A doctor would likely tell you that it's within a normal range. An increase in systolic blood pressure (the larger number) of 20 or more from lying to standing, within 3 minutes (while standing still), is called orthostatic hypertension. You might want to take some measurements throughout the day over a number of days to see if your blood pressure consistently goes up when you stand, or if there are patterns linked to factors such as temperature, recent physical activity etc. My blood pressure frequently goes up a bit upon standing (with similar numbers to what you shared), but it also frequently stays about the same or goes down a bit (systolic typically goes down less than 10). Heat and recent physical activity produce initial blood pressure drops upon standing for me, which can be quite large drops then come back up. I also have increases from time to time that qualify as instances of orthostatic hypertension (systolic goes up by about 20 or 30), but probably not frequently enough that a doctor would say I have orthostatic hypertension as a diagnosis.
  14. Hi GardenGal. By "loss of voluntary muscle control", do you mean because of sustained muscle contraction; difficulty initiating muscle movement (without involuntary muscle contraction); involuntary muscle twitching, jerking, shaking or convulsions; difficulty co-ordinating muscle movements; or something different? Although migraines could be a potential factor in unilateral episodes lasting a few hours or a few days, it would be a stretch to put unilateral muscle weakness lasting 8 months after an episode down to migraine. The third time I went to hospital, and the first time by ambulance, was described by a doctor or two as a possible TIA, but it also fit diagnostic criteria for an acute basilar-type migraine (which is increasingly now being called migraine with brainstem aura). I've seen someone on YouTube showing an episode of unilateral muscle contraction which she attributed to hyperadrenergic dysautonomia. Have you looked into acetylcholine involvement? This could relate to factors such as how much is released into neuromuscular junctions, how quickly it is metabolised, and concentrations of acetylcholine receptors. As a quick, rough guide to the effect of acetylcholine level on the functioning of skeletal muscle: None = (temporary) paralysis Too little = difficulty initiating movements, muscle weakness Too much = involuntary contractions, twitching, jerking, shaking, convulsions I presume by "mestanont" you mean Mestinon (aka pyridostigmine or pyridostigmine bromide). It inhibits metabolism of acetylcholine at neuromuscular junctions, meaning acetylcholine stays around for longer and increases muscle activation. I've read suggestions that it can dysregulate acetylcholine levels well beyond the lifetime of the doses taken, which fits what you described, but I don't have a good explanation for a biological mechanism for this. My forearms have become an area where I get frequent, usually mild-moderate, muscle pain that comes and goes, but it's not associated with contraction or muscle control issues. The neck and chest are also areas of frequent muscle pain, which sometimes turns into a more sustained and severe episode. Sometimes the upper arms, left shoulder and/or left shoulder blade are also involved. I've had pain/discomfort in the throat area occasionally but it's not as common for me as the other areas just mentioned. I don't get posturing of arms or legs, like in decorticate posturing, but I've noticed recently that when I'm not paying attention to my hands they will sometimes form into a shape like I'm holding a ball in each hand. The muscles aren't clenched tight. I've just found sometimes that they've gone into that position. Once I notice it I'm completely able to move my hands normally. I haven't really found that increasing or reducing any foods have helped noticeably with muscular symptoms. I just aim to have a healthy and varied diet.
  15. Hi @GardenGal. I think it's highly likely that testing will show some neuropathy for me (I also get tingling, numbness, hot and cold skin sensations, sharp pains that come and go sometimes etc.), but the extent to which that plays a role in my muscle-related symptoms is more complicated. My dysautonomia could be described as presumed primary dysautonomia at this point. Scans and pathology tests have supposedly ruled out a range of other possible primary conditions. I do have some skin symptoms, and a skin biopsy report indicating mild inflammation, that are possibly indicative of an autoimmune component, but nothing autoimmune has been identified from the pathology tests so far, and, if it is the case, it could be secondary to the dysautonomia rather than the other way around, especially since the skin symptoms became apparent later than other symptoms. I've had episodes of sustained muscle contraction. They aren't a frequent symptom for me, but if I pushed myself physically they might become more frequent. I've been to the Emergency Department five times in just over four years, with the first two times for unilateral muscle pain and contraction lasting several hours. These episodes involved the face, scalp, neck, top of the shoulder and upper chest, all only on the left side, like a line down the middle of my face formed a sharp boundary between severe symptoms on the left side and none on the right. Sustained muscle contraction hasn't been so much of a severe problem since those early episodes about four years ago. At that time I had a blood test that indicated low vitamin D, which could potentially have contributed to the severity of those episodes. The severe early episodes were also at the beginning of my dysautonomia symptoms becoming apparent to the point of being a problem, so, when I moved house at that time, I did more physically than someone with dysautonomia probably should. These first two episodes were diagnosed as migraine, and I have had an ongoing issue with migraine that started at that time. I've heard of people having some strange unilateral symptoms with hemiplegic migraine, including temporary unilateral muscle weakness or even temporary unilateral paralysis. I had a lot of unilateral stuff in the first 6-12 months of onset, but my symptoms became more and more bilateral and have typically been bilateral over the past three years or more.
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