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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 tes
  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 repo
  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.
  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 test
  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
  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
  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 whe
  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 g
  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
  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 mos
  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.
  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
  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
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