Steven

Thanks for the welcome. Hi to the other new members. I live in Australia. After 4 years of doctors misdiagnosing and being unable to explain my symptoms, I managed to diagnose myself and I am in the process of getting referred interstate for autonomic testing.

I hope your exercise is going well. I've come across quite a few POTS people online who like swimming, as the water keeps them cool, they can exercise while being horizontal, and the water pressure helps reduce blood pooling in the legs and arms. I think the important thing is just to find out what's achievable and enjoyable to sustain on a regular basis. The following is how things work for me, with a resting heart rate often in the 40s or 50s when lying down or sitting. If your body is used to a resting heart rate of something more like 80 or 100bpm, or if your blood pressure responds differently to mine, maybe a higher heart rate while exercising will be tolerable for your body. It's currently summer in Australia, where I live, so at the moment I pretty much limit extended physical activity to walking to the local shop and back, or catching the bus to do some shopping at the supermarket, which I try to do in the morning or evening to avoid the heat and direct sunlight. Last winter I would go to a gym regularly and use the cross-trainer, where you stand on the machine and use your arms and legs at the same time. The gym was air-conditioned, so the temperature was mild and constant, and it was in a shopping complex with windows facing indoors, so direct sunlight was not a problem. It was an upright exercise but the machine had handles to hold onto, which provided extra stability if I would get a little light-headed or off-balance. I would aim to do 30 minutes or more on the cross trainer at each visit and keep going for longer if I was feeling okay after 30 minutes. The machine had a TV screen and heart rate sensors where your hands grip the machine. I found out what I would usually be able to sustain for 30 minutes, in terms of speed/distance (also displayed on the screen) and heart rate. The guy who signed me up said that a good goal for cardio exercise, for people in general, is to get the heart rate up to 140bpm over the first 5 minutes and then keep it there. So I used that as an initial baseline goal and found an appropriate speed to stay above. Then I went to the gym when there was something on TV I would want to keep watching until the end. I would adjust my usual speed or heart rate goals up a little over time as I got used to doing it regularly, or down as necessary if I could tell I was getting too fatigued or otherwise symptomatic to be able to keep it up at that rate for 30 minutes on that day. If I was getting increasingly symptomatic right from the beginning I would aim to adjust to a rate I could maintain for 15 minutes, then see if I could keep going if I made it to 15 minutes. I found that 120-150bpm was an appropriate heart rate for exercise sustained for 30 minutes for me last winter, sometimes going up to 160bpm for shorter periods if I was feeling comfortable at 140-150bpm, then easing back down, coming from a resting heart rate that was probably in the 40s-50s when lying down or sitting. My heart rate at the moment, during summer, is often in the 100-150bpm range just from standing up, indoors in the shade. It takes an hour or two to settle back down to my resting heart rate after going for a short walk, so, even though the gym is air-conditioned, walking to the bus stop to go there during summer would put my heart rate too high for too long to make a visit to the gym practical. I find that I can often tolerate much longer walks in winter, so I will walk and listen to an audiobook on my phone with over-the-ear headphones to block a lot of the outside noise. This might not be so practical if you live in a noisy place.

I have come across the idea that taking an SSRI (Selective Serotonin Re-uptake Inhibitor) can help reduce heart rate and blood pressure fluctuations by maintaining a consistently high synaptic level of serotonin instead of the level fluctuating. I have previously tried fluoxetine (also known as Prozac), which is considered an SSRI, which I was prescribed for migraine, but my body wasn't able to tolerate it. Has anyone found that taking an SSRI seems to have the effect of reducing heart rate and blood pressure fluctuations?

I've found that a good, accessible overview of POTS is: https://www.youtube.com/watch?v=8UPMYNkm6Bc ...and a good overview that gets into more of the technical details of POTS is: https://www.youtube.com/watch?v=faScrmgKcWg

Thanks, RecipeForDisaster, Pistol and Missy M, for your suggestions. They give me a few things to look into a bit more.

For me it's similar to what Meghan wrote. If it's a little too warm it's difficult to function. If it's a little too cold I can add or remove warmer clothing as necessary, or move around a bit to warm up and get blood circulating, and it's easier to manage.

Skype could be a possibility for me for interstate consultations when no physical testing or in-person component is needed. Tasmania has medical travel assistance available where something is not available in a patient's area or in the state. I just did a quick search and South Australia also has medical travel assistance: http://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/health+services/country+health+services/patient+assistance+transport+scheme You don't need any positive tests beyond the relevant heart rate increase during a tilt table test to confirm a diagnosis of POTS. Part of the problem with trying to find the correct diagnosis is that most tests typically seem normal to doctors when someone has POTS. I am an academically minded person, so I have been reading up on research done at places like the Mayo Clinic and Vanderbilt University, and have purchased some text books on the autonomic nervous system, clinical autonomic disorders, autonomic neurology and autonomic disorder case studies. There are also a range dysautonomia/POTS Youtubers. The idea behind taking blood while lying down then taking blood again once tilted upright is basically to test for hyperadrenergic POTS, by measuring how much the levels of chemicals that affect the sympathetic nervous system change when posture changes. It's a bit more complicated than that, because the issue can be: - too much or too little of one or more of several chemicals get released with changes of posture, - one or more of the chemicals that are released with changes of posture get broken down too slowly or too quickly, producing a similar effect to too much or too little being released, - there are abnormally small or large numbers of the receptors that these chemicals activate on various organs, producing a similar effect to too much or too little of the chemicals being released - or a combination of these. POTS can be hypovolemic (involving low blood volume), hyperadrenergic (involving the changing balance of chemicals in the body) or due to autonomic neuropathy (nerve damage or dysfunction that can occur in various parts of the body). A single patient can also have a combination of these and the relative prominence of each can change depending on factors such as level of hydration, physical activity, temperature, and consumption of things like caffeine or alcohol. I can tell from my own testing with a blood pressure/heart rate cuff, combined with blood tests, brain scans etc. ruling out other conditions, that I meet the criteria for POTS, but it's hard to pin point the biological mechanisms involved in my specific case without proper medical testing. Different biological mechanisms would require different approaches to treating or managing symptoms.

Some people with POTS can take medication such as a beta blocker (eg. propranolol, metoprolol etc.) or ivabradine to lower their heart rate because it is consistently high. Some can take medication such as fludrocortisone (also known as Florinef), salt and water, or IV fluids to increase their blood pressure because it is consistently low. However, some people have both highs and lows of heart rate and blood pressure. My heart rate is often in the 40s or 50s when lying down or sitting but can go up to numbers like 120 or 150 bpm when I stand within an hour or so of going for a short walk and/or if the temperature is warm. My blood pressure is often around the edge of being low, such as 90/55 or 100/60, but the systolic pressure will go up into the 130s or 150s for an hour or more after going for a short walk if the temperature is warm. When I stay indoors in the shade, being fairly inactive and the temperature is not hot, my systolic blood pressure tends to stay about the same or go up a bit upon standing, or drop by less than 10. When standing after going for a walk on a warm day, my systolic pressure tends to drop from wherever it is to about 80-90, which can sometimes mean a systolic drop of around 60-70 within 10 seconds of standing. I'm not sure what the numbers are like during physical activity or during sleep, as I'm just using a blood pressure cuff to take readings at the moment. I try to avoid strenuous physical activity and hot temperatures because my symptoms get even worse and turn into near-fainting with temporary loss of vision, loss of sense of body position, sudden inability to stay upright etc., but I'm not sure how far the numbers go in those situations. I do stay hydrated and I tend to stay out of direct sunlight. Is there anyone here who has had much success evening out these kinds of highs and lows, beyond just avoiding heat and physical activity?

Thanks, Macca and Samantha. I've been to the neurologist in Hobart today, who is prepared to refer me interstate for neurology aspects of autonomic testing but not for cardiology aspects of autonomic testing. She's not convinced that the cardiology aspects of autonomic testing can't be provided locally in Hobart, despite me speaking to people in the cardiology department at the hospital and them confirming that they only offer basic investigations in the area of autonomic testing and that I will have to go to Melbourne for more comprehensive testing. So, for now, I'm getting referred to Monash Neurology for neurology aspects of autonomic testing and being referred to Royal Hobart Hospital for basic cardiology testing, so the cardiologist can then refer me to Melbourne for cardiology aspects of autonomic testing. Basically, now that I've done the research and delivered them my self-diagnosis, they should be able to confirm a diagnosis of dysautonomia/POTS in Hobart, but won't be able to differentiate between types or causes of POTS. It seems, for example, based on my discussions with people from the hospital and its outpatient clinics, that I can get a basic tilt table test in Hobart but can't get blood taken in the horizontal and upright positions during the tilt table test, to detect changes in levels of catecholamines (epinephrine, norepinephrine and dopamine) with changes in posture. This makes things unnecessarily complicated and will likely mean that basic testing done in Hobart will have to be redone in Melbourne, which would also make it unnecessarily wasteful. I wonder if I'll have to go through the same kind of mess in the future for an opthalmologist, a gastroenterologist, a rheumatologist, a dermatologist etc. At least I seem to be getting closer to actually having an appropriate formal diagnosis after 4 years. Maybe I'm also getting closer to having a knowledgeable doctor.

I've just been measuring mine over the past few weeks with a blood pressure/heart rate monitor while at rest, lying down and standing up. My highest reading over the past few weeks is 149bpm, upon standing, after lying on the couch for a few minutes, five minutes after getting home from a short walk to the local shop to get some milk. However, I feel that my heart rate is faster, and that I get out of breath, while I am actually walking to and from the local shop or carrying groceries home from the bus stop. When I get a heart rate monitor I can wear on my wrist, it will be interesting to see how high it goes when I'm walking, carrying groceries and doing other things. If I was doing something moderately active on a hot day, I think my heart rate could get significantly higher than 149bpm. I can't take beta blockers such as Propranolol because I also often have a resting heart rate in the 40s or 50s while lying down or sitting.

I get variable changes too. In case you are not aware, it's worth keeping in mind that the diagnostic criteria involve an increase of 30bpm within 10 minutes of standing (and staying still). I will often get a jump in heart rate immediately upon standing but sometimes I will get a moderate initial increase that continues to rise over several minutes, which often coincides with an initial increase in blood pressure. Even when I get a big jump initially upon standing that then goes down a bit and plateaus, if I stay standing the highest point within 10 minutes might be at, say, 7 or 9 minutes into standing. I usually don't bother standing for 10 minutes, because the first few minutes tend to show an increase of more than 30bpm and give enough indication of what's going on.

The instruction book for my blood pressure/heart rate monitor recommends not eating, consuming caffeine or exercising in the 30 minutes prior to taking a reading. Eating can make a big difference for some people but not make much difference for other people. Temperature and recent mild physical activity can also be big factors. For example, I recently had some readings on the same day of: 5.00am 51 to max of 81 within 10 min at 13 degrees centigrade 9.00am 46 to max of 90 within 10 min at 15 degrees centigrade 1.45pm 47 to max of 114 within 10 min at 21 degrees centigrade 4.45pm 82 to max of 149 within 10 min at 20 degrees centigrade, 5 min after walking 10 min to the shop and 10 min back with some milk 5.10pm 78 to max of 132 within 10 min at 20 degrees centigrade, 30 min after walking 10 min to the shop and 10 min back with some milk 8.10pm 59 to max of 117 within 10 min at 18 degrees centigrade In my experience, doctors tend to jump to conclude that an increase in heart rate is anxiety/panic attacks even if the patient says they are calm and don't feel at all anxious when it happens. My heart rate increases don't coincide with any feelings of anxiousness, worry, panic or concern, and I can take a reading every 30 seconds alternating between lying and standing with the heart rate going, for example, back and forth between 40s and 90s each time. It seems to me that anxiety could not be switched on and off so quickly to repeatedly get my heart rate back to the 40s, or whatever starting point it was at at the time, upon lying down.

Hi. I'm new to this site but I have been learning about dysautonomia and POTS for a while, following years of repeatedly being misdiagnosed by doctors who were at a complete loss to explain my symptoms. Following my own research, and monitoring my heart rate and blood pressure changes between lying and standing for the past few weeks and continually having heart rate changes consistent with POTS, I am due to see a neurologist in Hobart tomorrow to get a referral for autonomic testing in Melbourne. Does anyone here have any experience with getting autonomic testing in Melbourne, or in Australia? Does anyone have any experience with Dr Sue Corcoran or with any autonomic specialists in Australia, or with Caulfield Hospital or The Alfred Hospital for dysautonomia, POTS or autonomic testing?