Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by Steven

  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.
  16. Hi insertclevernamehere and welcome to the forum , Ivabradine is supposed to reduce heart rate without decreasing blood pressure. I've read that it is only recommended for people with a resting heart rate of 77bpm or higher. You might be a borderline candidate for using ivabradine to lower heart rate, but it could be worth a look, especially if your heart rate rises inappropriately during physical activity. Do you know how your heart rate responds to physical activity? Chest pain with exercise can coincide with a heart rate that is inappropriately high or a heart rate that doesn't rise enough to maintain oxygen supply appropriate for the level of activity. Here is a link to some info on ivabradine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1448693/ I have persistent migraine aura symptoms, cognitive issues and exercise intolerance that closely match what you described. My blood pressure is often around those levels at rest and can increase like yours in response to mild-moderate physical activity. I had symptoms of unacceptably low blood pressure when I trialled propranolol as a migraine treatment. I posted some details about my blood pressure and heart rate variations about a month ago, if you're interested in how similar or different my variations are to yours: https://www.dinet.org/forums/topic/29066-anyone-with-pots-had-much-success-evening-out-highs-and-lows-of-heart-rate-and-blood-pressure/ My diastolic blood pressure usually increases by about 20-30 within the first few minutes of standing from a lying position and stays around the higher level while I stay standing, or at least for the first 10 minutes of standing. Sometimes the diastolic increase happens in full immediately upon standing, but sometimes it will rise more gradually over the first 2 or 3 minutes. I have also noticed that if my systolic pressure goes up to the 140s or 150s my diastolic pressure goes up to where it's around 30-40 below the systolic pressure. My heart rate increases upon standing are higher than yours and my resting heart rate is lower than yours (too low for me to try ivabradine). I have pre-syncope more often than occasionally and it often happens just after standing up, not just after standing for too long.
  17. That's good. I prefer academically rigorous books, medical journal articles and talks from the people actually doing the medical research, and diagnosing and treating patients. Books considered 'accessible and reader-friendly' rely on medical info from those sources anyway, so I like to get it first-hand. I find that when reading text books is not working because of brain fog or other symptoms YouTube videos can be good, such as talks at medical conferences or medical school lectures. There are also 'accessible and viewer-friendly' YouTube videos that might be more suitable for sharing with people who wouldn't read a book, article or written forum discussion.
  18. Hi vjester94, and welcome. I have had episodes like you described in your post that last for days or a week, and have been bad enough to get them checked out at the doctor or Emergency Department. You mentioned heart attack symptoms in your title. I wouldn't describe mine as heart attack symptoms. When I first started having episodes of chest pain that included pain in the heart area I did read about symptoms of heart attack and other conditions to get a better idea of when chest pain indicates something that needs medical attention. I have chills sometimes but they don't consistently happen alongside episodes of chest pain. When I've had EKGs (known as ECGs in some parts of the world) because I've gone to the doctor or Emergency Department with chest pains, I've been told that the EKG looked fine when what they really meant was that the EKG didn't show clear evidence of an acute heart condition. For example, when I asked for a print-out my last EKG results that "looked fine" (not for chest pain on that occasion), the computer interpretation had labelled it "ABNORMAL ECG" and identified partial right bundle branch block and ST elevation. The computer interpretation had also been based on an age of 50 because my age had not been entered, even though they had my real age of 34 (as indicated by a stick-on label attached to the print-out with both my real age and my date of birth). The two things picked up by the computer interpretation also apply to a 34 year old and are not because of the default age of 50, but further things could have been missed because of criteria built into the computer interpretation system about what is considered to be within a normal range for a 50 year old as opposed to a 34 year old. In my research online into the topic I have come across computer interpretation systems for EKGs which use categories of 'under 35 years' and 'under 40 years' for some conditions, which cover my real age but not the default age of 50 years. Doctors are generally taught that the two things picked up in my case are probably benign when not accompanied by symptoms, so many doctors routinely dismiss them as normal, and, as has happened to me on several occasions, sometimes don't even bother to mention them to the patient even if they are experiencing symptoms indicative of the heart not working efficiently (which could be due to something serious or something treatable if diagnosed). It might be worth getting a copy of EKG print-outs to look at yourself, if you don't already do that, to see if the computer interpretation has identified anything to look up online or to have a cardiologist look into. Chest pain in people with Dysautonomia is not necessarily due to anything wrong with the heart. It can be (non-cardiac) muscle pain, excessive activity of the sympathetic nervous system, inflammation of connective tissue where the breast plate connects to the ribs, or something else.
  19. I have a range of visual symptoms that came on with my other Dysautonomia symptoms. For me, they are not connected to licorice or medication. I'm not taking any medication or licorice-based supplement, and I only occasionally eat licorice. Optometrists and opthalmologists have told me that they couldn't find anything wrong with the structure of my eyes.
  20. The onset of my muscle-related symptoms coincided with my Dysautonomia symptoms becoming a problem. My muscle-related symptoms range from occasional small twitches that don't really cause any problem, to persistent eye tremours that could be contributing to double vision and visual-processing issues, to muscle pains of varying degrees that come and go, to more severe muscle pain and contractions in the face, neck and chest which have resulted in a couple of visits to the Emergency Department over the past few years. Here is a link to info giving an overview of various causes of muscle twitching, with links to articles on specific causes: https://www.healthline.com/symptom/muscle-twitch#modal-close Number two on the list in the link above is Peripheral Neuropathy, which is an issue for many people with Dysautonomia: https://www.healthline.com/health/peripheral-neuropathy I think Peripheral Neuropathy is likely in my case, so I am in the process of arranging testing (and because of how things are in Australia for these kinds of things I don't know when that will happen). Muscle issues can also be caused or made worse by some medications that can get prescribed to people with Dysautonomia. I trialled fluoxetine (Prozac) a few years ago for migraine (or Dysautonomia diagnosed as migraine) and the side effects included a significant amount of visible twitching, mainly of fingers and toes, but also in other places around the body, as well as buzzing sensations, barely visible tremours and other things. I get these kinds of symptoms without medication, but there was a major increase during the time I was trialling fluoxetine, with frequent symptoms in areas of the body where I wouldn't usually have frequent symptoms of that kind. I've read that fluoxetine is a calcium channel blocker, which ties in with what you wrote about a possible 'calcium pump' issue with your muscles. I hope that gives you something helpful to work with.
  21. Hi Mistri, Here is a link to a free ebook by Dr David Goldstein that you might find useful: https://neuroscience.nih.gov/publications/Principles of Autonomic Medicine v. 2.1.pdf I also have some other text books. Some people would find them a bit more academic than they would like, and some of them are expensive if you can't find a cheaper second hand copy that delivers to your country, but here are some titles that you might like to look up. If you live in the US, and maybe in Canada, you would have a better chance of getting a cheaper copy of the more expensive ones on Amazon. I got one of my books second hand in 'Very Good' condition and the book that arrived is in very good condition, but many of the third party sellers on Amazon for that book didn't deliver to Australia. Clinical Autonomic Disorders, edited by Phillip A. Low Autonomic Neurology, by Eduardo E. Benarroch (with others) Primer on the Autonomic Nervous System, edited by Robertson, Biaggioni, Burnstock, Low & Paton Autonomic Disorders: A Case-Based Approach, by Paola Sandroni & Phillip A. Low You can browse the beginnings of these books on Amazon, including detailed contents pages. If any of them look like what you're after and you have any further questions, I might be able to answer your questions. If you're after something more like tips and advice for a general readership about managing and living with POTS/Dysautonomia, maybe someone else has some less-academic book suggestions for that.
  22. Hi Caro, Dysautonomia and POTS are misdiagnosed as anxiety A LOT. It can be difficult to get the message across to some doctors. Sometimes the more someone protests the doctor's misdiagnosis the more the doctor takes the patient's protesting itself to be symptomatic of anxiety. I had to repeatedly explain to doctors that my symptoms were not anxiety. To get doctors to move on, I eventually went to a psychologist to explain the situation and got a letter from him saying that in his professional opinion it was a physiological rather than a psychological issue. It can still be a problem if I see a new doctor. Don't let doctors use a diagnosis of anxiety to dismiss genuine symptoms because they don't know how to explain them. If a doctor refuses to listen, sometimes the best or only viable solution is to see a different doctor. If you want, I can share a range of YouTube videos with the common feature of people getting misdiagnosed with anxiety (and other psychological/psychiatric labels) that was later diagnosed as POTS, including many teenage girls. This info in this link might be helpful for diagnostic purposes if you haven't come across it yet: http://dysautonomiainternational.org/page.php?ID=30 The link might also be useful to share with a doctor. A Tilt Table Test would be the best way to demonstrate something measurable to doctors in a form they will accept for initial diagnostic purposes. Then there is autonomic testing that can be done to refine the diagnosis and figure out the finer details of what is going on. The heart rate and blood pressure measurements you posted, assuming they were taken correctly, are consistent with POTS. Maybe take some measurements at different times of day and at different temperatures, to see if the numbers are significantly worse at warmer temperatures or first thing after waking up. Wrist cuffs are supposed to be held still at heart level when the reading is done, so maybe hold her arm up at heart level when taking a measurement so doctors have less reason to question the measurements. Movement or positioning of the wrist cuff might possibly have something to do with the 199 bpm measurements, but it also wouldn't be out of place for POTS if her heart rate is going that high and maxing out the monitor at 199. Children and teenagers tend to have a higher heart rate than adults. My resting heart rate is usually in the 40s/50s/60s range, depending on factors like temperature, but I've measured a heart rate upon standing of 149 and it often feels higher than that when I go for a walk or do something moderately physical. I've seen numerous people on YouTube who have heart rates that can go close to or over 200 upon standing or when walking. My blood pressure measurements at rest usually look very similar to the ones you posted. I use an arm cuff because it is consistently positioned at heart level, both when lying down and standing.
  23. I also get a lot of the types of symptoms you mentioned, as well as some others, including temperature dysregulation, fatigue, disrupted sleep cycle (insomnia and hypersomnia), muscle twitching, muscle aches and pains (sometimes pain similar to a pulled muscle in the back or shoulder for weeks, but which can ease up for brief periods within those weeks and is not tender to touch so is not a pulled muscle), abdominal pains, sharp stabbing pains that come and go around the body, hot and cold sensations, electric shock sensations, bloating and gastrointestinal issues at times, migraines, shortness of breath, eye tremours and double vision in each eye (continually for three and a half years), visual processing issues, pattern aversion/pattern glare, numbness and tingling, skin issues (fragile capillaries, small bubbles that come and go under the skin that my doctor can't explain), orthostatic hypertenstion or hypotension under some circumstances, often have bradycardia (slow heart rate) at rest, cognitive issues (working memory, word recall, sustaining complex thought), excessive sweating, loss of proprioception (sense of body position) and sense of touch at times where I can't tell if I am standing up or lying down or which way is up or down, shakiness, nausea, breathing issues at times, and more. These things have been going on for four years. I did discover in the past few months that, based on my own measurements at home, I do also meet the diagnostic criteria for POTS. That now gives me something measurable that I can use to demonstrate that something physiological is going on, beyond me just saying that something is going on and describing symptoms. Although that didn't help on the weekend when someone called an ambulance for me and the Emergency Department staff hadn't heard of any term I mentioned to them and didn't look any of them up. I am in the process of arranging autonomic testing, which I think will probably detect some degree of autonomic neuropathy.
  24. Many people are told by doctors that their Dysautonomia and POTS symptoms are anxiety. I have been told that by numerous doctors, even though I have told them clearly and calmly that I haven't felt at all nervous, worried or emotional when feeling the symptoms. Some people get anxious in response to their symptoms, maybe more so in the beginning because they don't know what is happening when their heart rate goes up. A diagnosis of anxiety often means that the doctor doesn't have an explanation for the symptoms. Sometimes Dysautonomia and POTS are secondary to another condition and can go away if the primary condition is treated. Other times it will be permanent, but could get significantly better with the right sort of treatment or management (which will vary depending on what type and cause a particular person has). I don't yet have any medications that work for me, but many other people say that medications have been helpful - sometimes very helpful. If someone has high heart rate at rest and with standing or activity, they can take something to slow down their heart rate. If someone has low blood pressure at rest and with standing or activity, they can take something to raise their blood pressure. If someone has consistently high or low levels of a chemical in the body, they can take something to raise or lower that chemical or the effect of that chemical in the body. Of course, see a qualified health professional before taking anything. I am in the process of arranging autonomic testing to learn more about my type of Dysautonomia/POTS, then maybe I will come up with some things that are more helpful for me. I also get purple legs with standing (sometimes called acrocyanosis, livedo reticularis, blood pooling or veinous pooling) and it can also be in a blotchy or mottled (unevenly discoloured) pattern. This tends to be worst when standing still, so moving around a bit or flexing leg muscles on the spot can help. It can also happen with hanging arms. It can be a long-term/permanent condition but can also have flares. Things like heat and over-exertion can bring on a flare. Many people have flairs over summer. If you live in a really cold place, maybe winter would be the worse time of year. You might do better with exercises that you can do seated. Gyms have exercise bikes where you can be seated, as well as rowing machines and other things. Many people like swimming as an exercise. You might also be able to do strength/resistance exercises that don't raise the heart rate as much as cardio exercises. Some people also like yoga or pilates. I walk in the morning or after the sun has gone down. It would be really helpful to have a doctor who understands Dysautonomia and POTS, so your doctor can educate you instead of you trying to educate your doctor. It could help to add your country to your profile on here so people can offer suggestions about where to find good doctors, autonomic testing or specialised clinics in your country. It could also help to take blood pressure and heart rate readings at home from time to time, lying down and standing up, at different temperatures, at full rest and after mild exertion, as many doctors will take a reading while sitting in their air-conditioned office and base decisions on that, but the differences between lying down and standing, at different temperatures, at full rest and after mild exertion, are important because the readings can change quite a lot depending on those factors. They do for me. I hope that helps.
  25. There's a new twist. The neurologist I saw in Hobart recently told me she was going to refer me to Monash Neurology for autonomic testing. I received a letter from the neurologist today written to the Blood Pressure Disorders Clinic in the Department of Clinical Pharmacology at the Austin Hospital, which means Chris O'Callaghan or one of his colleagues, asking them to review me and arrange further testing. Can anyone tell me whether Chris O'Callaghan typically gets autonomic testing for his patients done through Monash Medical Centre or whether he uses the Austin Hospital, or somewhere else like The Alfred? Have you found that Chris O'Callaghan has a thorough enough knowledge of the subtleties of POTS to know what autonomic tests to order to identify the biological mechanisms involved in a specific patient? From watching a talk he gave to a group of ME/CFS people and reading some things he has written, he seems knowledgeable about what symptoms people present with but perhaps is not so familiar with leading international research on POTS. In case anyone is interested, the talk is at https://vimeo.com/110989159 The following is a quote that I think is a bit concerning from his listing at http://www.healthdirectory.com.au/Medical_specialists/Endocrinology/56208,479667/Assoc. Prof. Chris O'Callaghan/ I know from watching his talk that his knowledge is more nuanced than it probably comes across if all someone has read is the quote here, but it seems that he might have his own pet theory that deviates significantly from leading international research on POTS and/or that he doesn't really get how POTS differs from related or broadly similar conditions in a practical sense beyond the diagnostic criteria. Feel free to private message me with any helpful info if you don't want to discuss specific doctors, hospitals or outpatient clinics publicly.
  • Create New...