ks42

It is definitely possible to have good days where POTS symptoms aren't as easily apparent, while still actually having POTS. My spouse had a near-normal TTT the first time, despite having standing heart rates up into the 200 range a lot of the time before and after the test. It just wasn't every day, so they didn't catch it right away. There are also many other autonomic disorders besides POTS that could cause various symptoms, like fainting. The other issue is that many docs who aren't specifically POTS or dysautonomia savvy aren't familiar enough with the diagnostic criteria for things like POTS or NCS / Vasovagal Syncope, and will dismiss minor fluctuations in blood pressure as normal, and may not recognize POTS, either. When I was first getting sick, I had some documented increases in my heart rate of over 100bpm, but had something like 3 or 4 major big-name cardiologists tell me that was "normal" and I couldn't possibly have POTS. I also had major orthostatic hypertension - my blood pressures were getting into very dangerous hypertensive crisis / stroke range but they told me that was normal too (it's not). They wanted me to see a psychiatrist. Fortunately, another doctor, who knew POTS quite well, looked at all my vitals and test results, and diagnosed me with POTS (telling me I didn't need psychiatry, I needed a good autonomic specialist!!)! I would recommend getting a copy of the report from your test, and the raw data, if you can get that too. If it looks like they might have missed something, you might want to take it to an autonomic specialist.

My spouse and I both have dysautonomia (POTS specifically). I am like your one daughter - I can't get excited about anything, I actually have to tamp down my emotions (both good and bad) and stay in pretty low key situations or it kicks up my adrenaline and flares my POTS big time. However, my spouse is the opposite and has profound fatigue, which we think is directly related to stress instead of adrenaline, but we're not entirely sure - it could just be that something like CFS could be complicating things, it's hard to say.

I think it really depends on the doctor you're seeing, what their specialty is (neurology or cardiology), and whether you just have a single appointment with a POTS doc for consultation, or whether you have a full several day long autonomic workup at one of the major medical centers. If it's just one appointment with a POTS doc, it will probably just be an initial consultation. Most of the tests needed when diagnosing dysautonomia are very specialized, and can't be done same day or in office (unless you're traveling to a major medical center specifically for that purpose). Most of my initial consultations were about an hour long. They'll probably ask you lots of questions about your symptoms, when and how they started, etc. Taking a symptom list or symptom journal is really helpful. It's also helpful to bring a HR/BP log with at-home poor man's tilt data. The doctor may have you do a poor man's tilt in the office (take vitals lying down and standing up) and may also do a thorough neuro or cardio exam (depends on what type of specialist you're seeing). After that, they'll probably determine what type of tests you need. They may order more bloodwork, autonomic testing (like a tilt table), a cardiovascular workup, and/or other tests that help rule out underlying causes (like EMGs, CTs, MRIs). What you need depends on your individual presentation and medical history. In some cases, they may be able to prescribe or modify your medication regimen, again, depending on your circumstances. However, if you have a full autonomic workup scheduled at a major medical center that spans a few days to a week, you may have a battery of consultations and tests (they typically send you an itinerary explaining what tests you'll be having and when).

I don't do low carb either, but all the carbs I do eat are complex, not simple, carbs. My diet is basically clean eating / low glycemic. Everything I eat is at least a 50 or lower on the Glycemic Index scale. Organic, fresh, all of that. I eat TONS of veggies, proteins like turkey, chicken, fish, and occasionally steak, complex carbs like brown rice and beans, steel cut oats, quinoa, etc, nuts, and plenty of low GI fruit. Some dairy (like kefir and unsweetened yogurt). I do make some Paleo type sugar free desserts and snacks, so I actually have a pretty wide range of foods I eat. I also include lots of healthy fats (fish oil, flax, avocados) - this makes a HUGE difference in brain fog and tremors. I have completely cut out all of the following: - Simple carbs - Sugars and sweeteners (including even "natural" sweeteners like honey, molasses, maple syrup, brown rice syrup, etc) - All processed foods I didn't realize how badly the above foods (especially simple carbs) were affecting me until I cut them out; I noticed a huge improvement within a month in brain fog, dizziness, fatigue, adrenaline surges, and even reduction in standing tachycardia. Obviously, I'm still sick, and it's not a cure, but it's a big help. If I go back to eating simple carbs, I start to see a return in some old symptoms that I haven't had for awhile. Even the tingling/burning in my feet stays away if my diet stays low GI. Even though I'm not vegetarian (I feel awful without meat protein of some sort), I take a lot of inspiration from this blog (Deliciously Ella, who feels she healed her POTS through diet)

I have similar symptoms, like yours, that come and go. I'm starting to notice that flares of dizziness, heaviness, and other symptoms may be related to seasons, weather changes, barometric pressure, humidity, and diet. I basically tank when it rains, or when there's a big seasonal weather shift. I'm sorry you're going through that right now - hope you feel better soon!

It depends on the formulation of Verapamil they were given. Do you know whether they were given something like Covera-HS, Verelan, Calan SR, Isoptin SR, or the generics of these? I believe the sustained or extended release versions may be more commonly prescribed now than the short immediate acting. If it is one of the extended release versions, only about 13% of the drug will be available for the body after the first dose, and it will take approximately 5 days (give or take - every patient is different) for it to build up in the system and reach "steady state". With immediate release, short acting verapamil, given its pharmacodynamics, you could technically see some sort of effect anywhere from one to 48 hours after the first dose (I know, it's a wide range, but depends on several factors).

I know that pretty much every drug in that class is famous for causing severe fatigue, especially if you're sensitive to beta blockers. But, supposedly Bystolic (nebivolol), which is a little newer, is known to cause less fatigue than others, so far. Then again, everyone reacts so differently - what causes fatigue in one person may not cause fatigue in someone else. My doctor was originally going to let me go through all 15 beta blockers to figure out which one I could tolerate best. I've tried Metoprolol, Nadolol, and Atenolol, and didn't actually have fatigue issues with any of them (although I had to stop them for other reasons). However, it might be dose-dependent, too. With all of them, I was given the lowest dose pill, and told to cut it in halves or quarters. The plan was to stick with the lowest dose that kept my heart rate in a reasonable range, but didn't make me tired or dizzy.

Right before and after I was diagnosed with POTS, I developed severe constipation and that spasm-type abdominal pain that was diagnosed at the time as IBS-C. Fiber and laxatives didn't help; in fact, I think the fiber actually made it worse to a degree. I eventually saw a GI specialist who told me IBS is one of those things that very often has an underlying cause. In some people, there is no known cause and you wind up having to treat the IBS itself. In other people, it can be caused by conditions like gastroparesis (really common in dysautonomia / POTS, and there are meds that specifically treat this), SIBO (small intestine bacterial overgrowth), other forms of dysbiosis, GI infections, Celiac disease, and food allergies. I'm assuming if you've been diagnosed with IBS-C, you've probably been tested for most of these, but if you haven't, you might want to consider looking into some of these tests, as there are specific treatments for these conditions that can help reduce IBS symptoms or eliminate them all together. I got tested for all of these, and wound up positive for gastroparesis and SIBO. I also had a comprehensive digestive analysis, so I was able to modify my supplements and diet around what was going on in my GI. This was immensely helpful. After getting treated with antibiotics for SIBO and various dietary / supplement modifications, I no longer have IBS, and oddly, I no longer have gastroparesis either (although it could have originally been a false positive, or my ANS could have healed in that area). What helped me immensely, even before I had any testing done to determine the cause of my IBS: 1) I cut out bread/flour/simple carbs. Breads, pastas, rice, etc are hugely constipating, even if you don't have gluten issues. This also really helped my POTS too. 2) Ate about 5-6 servings veggies a day (1 serving = 1/2 cup). The fiber in veggies was much more helpful for me than the type of fiber you find in a supplement. 3) Cut out sugar, as that also promotes constipation (again, this also helped my POTS). 3) Took probiotics specifically designed for IBS-C (as per my doctor, every time I finished a bottle, I'd switch to a new brand/strain). Needs to be at least 50 billion CFU, and I had to work up to taking 3-4 pills per day. 4) Added more oils (healthy ones!!) into my diet. Per my doctor and naturopath, I took 2tsp toasted sesame oil per day, and eventually added in some flax & fish oil 5) Castor oil packs (these relieve constipation and spasms pretty much overnight, and for me, work much better than miralax). I would do these every night for about 5-7 days, take a few days' break, then do it again if needed. 6) Took OTC stool softeners (without added laxatives) for a short period of time while I gave the above things time to work 7) Took digestive enzymes (specifically Pure Encapsulations brand, as it worked best for me at the time). I also agree with the above comment about eliminating gluten; some people have nothing but constipation as the main symptom of a gluten intolerance, allergy, or Celiac's disease. I think if I had to suggest only one thing, I'd say probiotics. They are amazing for digestive issues. I hope some of these suggestions help!

Any infection I get (UTI, sinus, etc) causes a huge flare in POTS symptoms. I agree with Stellaluna. There are many antibiotic-resistant strains of UTIs; sometimes you have to go through a couple antibiotics before you find the right one for that particular infection. If an antibiotic isn't working, your doctor might want to do a C&S (culture & sensitivity test) where they send urine to a lab, where they'll identify exactly which bacteria is causing the infection, and then test antibiotics to see which one will be most effective. As a side note, I always take D-Mannose along with antibiotics when I get a UTI. It's amazing stuff, helps kick it out a lot faster. Lately it seems that if I catch one at the beginning, sometimes D-Mannose is all I need to get rid of it (although I always do that with doctor approval, and have the doctor test to make sure it's gone in those cases).

The Polar brand with chest strap are known to be most accurate. However, I got tired of dealing with the chest strap every day, so I have a Mio Alpha, which measures heart rate via wrist. It works just as well as any chest strap monitor I've used. The only thing is, it's not that small. I like it, though, I think it looks good. My spouse has used both the fitbit and the garmin activity trackers to keep track of heart rate, and has found those to be accurate as well, regardless of what blood pressure is doing at the time.

My almost daily fevers can run around 100-101. If I have a flu, sinus infection, or cold, I'll get fevers that are much higher for short periods of time. Chronic fevers are typically either infection or autoimmune disease, so after thoroughly ruling out autoimmune disease, we suspect an infectious cause. One of the biggest reasons they suspect infection is because my spouse also suffers from the same fevers, also got POTS shortly after I did, and we both have had a bronchitis-type coughs for two years (and we've ruled out asthma, allergies, and respiratory disorders). We were both extremely healthy prior to diagnosis, so the doctors are pretty convinced we both got infected with something! We are also looking for potential exposures, but it's believed that because of the fevers, infection is probably more likely the issue. So far, neither of us test positive for typical acute infection markers (like elevated WBC counts) but we've found reactivated Epstein Barr and a couple other viruses. I'm also borderline positive for Lyme, so we don't know how that plays into all this. We're doing a lot more infectious disease testing before we formulate a plan of attack.

I've been getting unexplained fevers since the beginning of my POTS, and have been told that fevers are not a symptom of dysautonomia. For me, all of my doctors - POTS specialist, PCP, infectious disease specialist, etc. feel the fevers are part of the underlying disease causing the POTS, which is probably a chronic infection. Fevers, chills, and body aches - even if you don't have congestion, sore throat, cough, etc. - are classic symptoms of various viral and bacterial infections, including influenza. If you haven't had fevers all along with your dysautonomia, you might want to consider seeing your doctor, or at least calling and checking with him or her. A fever of 104 is really high.

Are you looking for northern or southern CA? There are POTS specialists at UCLA, and at Stanford, where they have full autonomic clinics. I believe there's also a cardiologist in La Jolla that treats it as well (check the DINET physician list). I also heard a rumor that UCSF is opening an autonomic clinic early in 2016, but don't really have much information on that. I had a couple of fantastic docs in San Francisco as well that diagnosed and treated my POTS, so if you want some specific recommendations for that area, PM me - I can give you names of primary care docs, cardiologists, and neurologists who understand and have treated POTS, even though they're not explicitly POTS specialists.

Depends on the cardiologist. I had several that I saw after I had a concrete diagnosis of POTS from a very reputable cardiology center, who told me it was anxiety and to see a psychotherapist. Even though I was hospitalized for a ridiculously high pulse, and they could clearly see on the monitor that my pulse jumped about 100 bpm when I stood up to go to the bathroom, they told me it was all in my head. I find it's helpful to bring a few things with me to the appointment: - List of the top most troubling symptoms I have, even if they seem unrelated to the condition I'm going in for - A symptom timeline (when it started, how it progressed, etc - I keep it brief) - A chart of several Poor Man's Tilt table tests I've done at home (lie down for 30 minutes, record pulse and BP, then stand for 10 minutes. Record pulse and BP every 1-3 minutes while standing). - An article on diagnosis of POTS by Dr. Grubb (who is a highly esteemed cardiologist). http://dynakids.org/Documents/pots_article2.pdf Very often, I also bring a summary of tests I've had done and the results, since my records now exceed well over 100 pages, and it's really hard for them to go through all of that at one visit. So a one page summary helps direct them to the appropriate tests / results if they need to look over something. I think it's a good idea to bring your pulse watch and show the doctor in the office what your pulse is doing when you go from supine to standing. I've done that in many offices, and it's been very helpful. And, keep in mind that many general cardiologists are used to looking for heart disease (which people with POTS typically don't have). So, if they don't see evidence of blocked arteries or arrhythmias, you may be told you're fine. Depending on how POTS literate your specific cardiologist is (or isn't), an electrophysiologist (specific type of cardiologist) or autonomic neurologist may be necessary for correct diagnosis in some cases.

I had a doctor at one point who sent several patients to Dr. Arata, one of the main doctors who does this in the U.S. I got to speak with the patients, and they were doing really well after the procedure - their POTS symptoms had lessened a lot or disappeared completely. These patients swore by it and said it changed their lives. However, I've also heard of several people who have had their symptoms return months or years after the procedure (sometimes worse than before) and have needed the procedure to be done again. The biggest issue for me is that because the procedure is so new, we don't have any long term studies on it. I think it may have only been around since 2009 or 2010 (can't remember though, so don't quote me on this). So we really have no idea how well people do over the really long term. Do they suffer adverse events? Do they have a higher risk of stroke, thrombolytic events, etc? All are possible outcomes, but at this time I don't believe we know. Given that I have EDS, I would have a much higher risk of adverse events from a procedure like this, so for my peace of mind, need more studies done on a larger more varied population in order to feel comfortable with the procedure. Canada is currently doing some larger clinical trials on it, and I believe some other countries are as well. And, in many cases of MS where they've confirmed jugular vein blockage, they've also found that some underlying issue is causing the body to produce high levels of endothelin-1, which blocks the jugular vein. Theoretically, then, if you unblock the jugular vein, but there is still an underlying issue there, you're not treating the root cause of the problem. So, TVAM just becomes very expensive (and perhaps risky) symptom management that may have to be repeated over time. This may also be the case with POTS. So again, I'm waiting until more research becomes available.

That was one of my very first symptoms, almost before the POTS really started. I could have a normal heart rate, but it would be bounding so much that, like bigtrouble, I could see and feel my pulse in my neck, wrists, stomach, etc. It was super uncomfortable. I had that symptom pretty much non-stop for the first three to six months that I had POTS. Turned out there were two things that caused it in my case: episodes of high blood pressure, and pretty much constant sympathetic over-activation. My echo was fine. Had some physiologic regurgitation, but physiologic regurgitation is something you see on many (if not most) healthy people's echos). Being put on Klonopin pretty much eliminated this symptom, although I do still get it occasionally. Beta blockers were also really good at calming down a bounding pulse, but I can't take them right now as I my resting pulse is too low. Fluid overload (if for some reason you're retaining too much fluid) can cause a bounding pulse also, but in my case with my tests showing that I was hypovolemic, that wasn't a concern. Good luck with the cardio appointment!

Yes, a tissue punch test - if they are looking for small fiber neuropathy - can help diagnose autonomic issues. There is a list of autonomic specialists on the DINET website. Some of them may in fact take Medicaid, I know there is one near me that does. You'd have to probably call the offices and see: http://www.dinet.org/index.php/physician-list If there isn't anyone near you (and that happened to me at one point, when I was living really far away from autonomic specialists and couldn't travel), here's what I do: Call around to every EP (electrophysiologist) and neurologist's office in the area (if you're in a large city, maybe not every single one, but as many as possible). Ask if the doctor (or doctors) on staff are familiar with POTS. If the front desk doesn't know what you're talking about (highly likely) ask if they can check with a doctor or office manager and call you back. If they are familiar with the disorder, ask if they've had many patients who have had it. Ask what tests (if any) they order or have available for autonomic dysfunction. For example, do they have access to tilt table or autonomic reflex screening? QSART? I found most offices were willing to answer these questions, once I explained that POTS is very rare and I'd been through many doctors who couldn't help me. They understand not wanting to waste the time of someone who is chronically ill, as well as not wanting to waste the insurance company's money. Also, as far as a tilt table, yes, a tilt table test alone just looks at heart rate and BP (diagnoses POTS, orthostatic hypo or hypertension, and syncope disorders). However, many specialists will do something called Autonomic Reflex Screening (ARS), which is a tilt table test combined with a bunch of other autonomic tests (which Statesof was referring to). Additionally, keep in mind that POTS is a syndrome, not a disease. Meaning, it's a collection of symptoms that are caused or triggered by an underlying disease. In many people, they can't find the cause, and just call it "idiopathic POTS" and treat the symptoms. So you want to make sure your doctors are aggressive in trying to find the underlying cause of your POTS in the beginning, because many things - including toxins, hidden chronic infections, autoimmune disorders, paraneoplastic disorders, carcinoid syndromes, endocrine disorders like Addison's disease, mast cell disorders, genetic disorders, and structural abnormalities of the brain and spine (to name just a few) can cause or mimic POTS and/or dysautonomia. Sometimes finding and treating the underlying cause is the only way to treat the POTS. To get my POTS figured out, I have a team that includes a POTS specialist, infectious disease specialist, biotoxin specialist, pulmonologist, gastroenterologist, and nutritionist (and getting my illness figured out is still a work in progress).

Yes, POTS is a form of dysautonomia, and dysautonomia is a neurological disorder. However, it is a disorder of the autonomic nervous system. You have two main nervous systems in your body: the CNS (central nervous system) and the PNS (peripheral nervous system). The autonomic is a branch of the peripheral nervous system. General neurologists are trained to look for diseases that mainly affect the central nervous system. They are educated in diseases of the peripheral nervous system too, but not with a lot of detail and emphasis placed on the autonomic system. This is partly because, up to this point, autonomic issues were supposed to be extremely rare, so more time and energy is put on disorders of other parts of the nervous system. So when they say you don't have neurological issues, that may mean they've just ruled out disorders of the CNS and somatic branch of the PNS. One thing that might help is to ask specifically about autonomic neurological issues. Let them know you're aware POTS is an autonomic nervous system disorder, which is tested for and treated differently than most other neurological issues, and ask what your options are for testing and treatment of this disorder. As someone mentioned above, it requires autonomic reflex testing (QSART, valsalva, breathing tests, tilt table) which is different than other neurological disorders. Don't hesitate to bring in research (for example, some of the basic papers written by Dr. Grubb can be extremely helpful). In my experience, I haven't gotten a ton of help from cardiologists or neurologists who don't specifically specialize in autonomic disorders, so I had to seek out specialists in autonomic disorders before I was really properly diagnosed and treated.

I've been to four neurologists so far specifically for my dysautonomia. The first was a general neurologist, who did not specialize or have much knowledge of POTS, but I was sent to her because of the dysautonomia, so yes, I definitely talked about it. At that time, my diagnosis of dysautonomia was still tentative. She did a poor man's tilt table in her office and confirmed the high standing heart rate, but didn't do any other testing to confirm the POTS (like a tilt table). However, she did a bunch of other testing that would rule out underlying causes of dysautonomia, or other diseases that mimic it, like MRIs, nerve conduction studies, and so on, which was extremely helpful. The next three I saw were all dysautonomia / POTS specialists, so of course that's what we discussed. They were extremely helpful in ruling out a lot of various underlying conditions (like autoimmune disease) and confirming the dysautonomia diagnosis via full autonomic reflex testing, catecholamines, small fiber biopsies, and tilt testing. The one autonomic neurologist I have now is willing to do IVIG for small fiber neuropathy if there are any signs of autoimmune disease or immune dysfunction. So neurologists have been the most helpful specialists I've seen so far.

My EDS type III was diagnosed by a rheumatologist back in 2008. The POTS doctor I saw at Mayo kind of confirmed the diagnosis. However, these diagnoses were based purely on clinical exam, and many of the other specialists I've seen recently haven't wanted to accept these as definitive diagnoses, because they were made clinically and weren't done by a geneticist. In 2008, I was told there really aren't blood tests to diagnose EDS type III, but there is testing for the other types. So, I'm going to be seeing a geneticist who specializes in EDS soon just to make absolutely sure it truly is type III, and not one of the other hypermobility syndromes. It will also allow me to check for some of the complications that go along with EDS (like hypercoagulability syndromes and things like that). There are geneticists that specialize in EDS, or have worked with a lot of EDS cases. If you can find one like that, that might be a good route to go. General geneticists without an interest in EDS can be kind of hit or miss, from what I've heard.

Statesof is right - POTS itself is actually diagnosed strictly based on heart rate. If your heart rate increases at least 30 beats per minute when tilted upright, OR if it exceeds 120, then you have POTS. Your blood pressure could stay perfectly stable the entire time. It's very true that blood pressure fluctuations are common in dysautonomia, so very often patients with POTS will also have issues with blood pressure. A large drop in blood pressure during a tilt typically indicates orthostatic hypotension, which is different from POTS, although they commonly occur together. Unfortunately, it is a common misconception among doctors (even cardiologists, particularly those who don't see a lot of POTS patients) that POTS is based on blood pressure, or requires some sort of blood pressure fluctuation. Perhaps your friend can request her written tilt table results, and see what her heart rate was doing during the test?

I agree with what everyone else has said - strep needs to be treated, it can be dangerous and cause damage to the heart and other organs (and yes, I've also been told strep can possibly cause autoimmune type damage to the autonomic nervous system - which you definitely don't want). There are a lot of drugs out there that treat strep, though, but with resistant strep, it can get really tricky. I agree with looneymom - in someone whose strep hasn't cleared after a round or two of antibiotics, I'd probably request at least the two blood tests she mentioned. For me, at one point years ago, straight penicillin was the only thing that was found to get rid of my chronic strep; can't remember if they did it orally or through IM injection (I think that one was IM injection). Nothing else worked. I'm sorry you're dealing with so many side effects from the antibiotics - some of them can be nasty, I know. Hope you can find something that's tolerable. Hang in there!

My newest neurologist wants to run spinal taps on my spouse and I (since we both got POTS around the same time) which I think is an excellent idea. There's a lot of valuable information that can be gained from it, especially if an infection or certain type of autoimmune disorder is suspected. However, the rheumatologist who diagnosed me with EDS told me to be very, very cautious with spinal taps due to the higher risk of spinal fluid leakage and development of chiari with EDS patients. My neurologist doesn't think this is a big concern at all - then again, I'm not sure how many EDS patients he's actually done spinal taps on, though. I'm going to discuss this with a geneticist who's familiar with EDS before I make my decision. In the meantime, I have two questions for you all: 1) Has anyone had an abnormal spinal tap with POTS, and was it diagnostically helpful? 2) Has anyone with EDS had a spinal tap, and how did it go? Did your doctor(s) take any precautions to prevent spinal fluid leakage, like using a smaller needle, doing an immediate blood patch, etc.?

So sorry to hear about all of your struggles! I hope everything works out with the mito specialist! The profound weakness you describe - like having the wind knocked out of you - I get that too. I am too weak to sit up, eat, move my arms, and I get tremors and will literally fall if I try to stand because my legs are so weak. During one episode it felt like my respiratory muscles were too weak to breathe, although that symptom was short lived. This weakness was one of the very first symptoms I had, when I first developed POTS, that sent me to the ER. Now I only get it (in a much milder form, thank goodness) when I push myself. I don't know what causes it, but I know that it feels awful, so I'm sorry you're going through that! I also have EKG abnormalities that weren't there before I got sick - ST segment depression, flattened T waves, and so on. We don't know what causes it. And I do occasionally have low CO2 and high anion gap as well, with high hemoglobin. In my case, those were all attributed to dehydration / low blood volume, although we don't know for certain. I'm sorry you didn't get more answers while in the hospital, and I do hope you start feeling better soon!!!

I don't push myself at all for two reasons: 1) Yes, high heart rates that are not induced by cardiovascular exercise (anything over 100 usually) can cause unnecessary stress on the heart and there is a risk of developing cardiomyopathy (tachycardiomyopathy). The risk is super low for some people, higher for others, so that would be a conversation to have with your doctors. However, in my case, my doctors said I should be avoiding prolonged heart rates above 100. Many POTS doctors advise a recumbent (reclined or laying down) exercise regimen at first. My POTS doc wouldn't allow me to do ANYTHING upright - even short walks - for the first six months I was sick (maybe more, can't remember). 2) If I push myself, my POTS just gets progressively worse. My heart rates get higher and higher each day, and my body starts pumping out way more adrenaline than usual. Eventually, I become so weak I can't stand without tremors, and feel like I don't have enough energy to lift my arms or even breathe. It's scary stuff. Also, my blood volume depletes to the point where I wind up in the ER on oxygen and fluids. So no, in my case, pushing makes me worse. A LOT worse. After a period of bed rest, my heart rates actually improve a lot, to the point where I can walk almost an hour a day, but I don't improve until I stop pushing and let myself heal. Everyone is different. Some people can push themselves and actually feel better. I think it depends very much on the specific underlying cause of your POTS, the type of POTS you have, whether you have any other condition(s) along with it, and so on. So this is just my own personal experience; I can't speak to whether this applies to you or not.