basktbal22

No, sorry, I use the ones at the gym and they are hugely expensive.

Have you ever considered a recumbent bike? I have slightly elevated blood pressure, not in your range, but by working on a recumbent bike it has been regulated and better lately. Just a thought---and yes, I would avoid exercising in the upright position for now. But walking and recumbent bike sound like great exercises if you can tolerate them. I am religious on the recumbent bike, 6 days a week, and I feel it has been the #1 contributor to my recovery.

I don't mean to scare anybody, but my POTS symptoms began shortly after getting the flu shot a few years ago. I will never get the flu shot again--but primarily for superstitious reasons as a result of this. I bet this is just coincidence, however. Did anyone else notice their symptoms beginning shortly after receiving the flu shot? Again, probably just coincidence. I have been meaning to post this question, just never got around to it because of the obscurity of the theory that a flu shot can cause pots or possibly exacerbate it to the point that one notices their symptoms.

Pat57- norepinephrine is a catecholamine, as you stated. It actually increases heart rate and constricts blood vessels, thus leading to a higher blood pressure. At this point in time, I am not trying the drug because my norepinephrine levels are already 4x the upper limit, and this drug would just make them higher. Also the serotonin issue, which I explained in my post. Normally I wouldn't stress so much about taking a drug, but I recently returned to school after being out due to symptoms for a year and a half, and don't want to crash again. My understanding regarding SNRI's/SSRI's is that they are good for raising blood pressure, but my blood pressure is already slightly elevated. It has also been suggested that SSRI's/SNRI's might help to 're-regulate' the autonomic nervous system, which is something I don't understand at all. I would think this 're-regulation' and blood pressure boost would be the reason most doctors prescribe the drug for POTS.

Thanks all for the responses. At this point in time, I have decided not to try the drug. It just doesn't make sense as to why he wanted me to try this. My serotonin is already high, as serotonin syndrome was mentioned in another post, my blood pressure is slightly elevated and stable, and my norepinephrine levels are also high. From my understanding, an SNRI would just make my serotonin and norepi levels even higher. I can't believe this doctor suggested this. If anybody has any insight as to why it could be beneficial, let me know. I have heard that SNRI's can help re-regulate the autonomic nervous system.

Gatorade alone actually hardly has any sodium (salt) content. I add 1/4th a teaspoon of sea salt to the gatorade. It doesn't taste great, but it's worth it.

I can relate. When I am on my feet, moving around alot, I typically get blurry vision when I stop what it was that I was doing. I believe this is at least similar to what you explained. I have found that by drinking even more fluids and consuming more salt, I can avoid this to some extent. Helpful drinks for me are gatorade/sea salt and orange juice/sea salt.

I had an appointment with an endocrinologist who is somewhat knowledgeable on POTS (and my case). To my surprise, this doctor prescribed effexor, an SNRI (antidepressant) that works on both serotonin and norepinephrine receptors. He claimed that thbis drug might help me with POTS symptoms and flushing, of all things (there are documented cases of it helping 'hot flushes', and the doctor said he had even prescribed it for idiopathic flushing and it had helped patients in the past). The thing is, my serotonin and norepinephrine levels (blood/serum) are already elevated! It seems counter-intuitive for me to use this medication, if it is going to make these levels 'worse'. I discussed this with the doctor and he said he was prescribing it more for its ability to 're-regulate' the autonomic nervous system. Any thoughts? I should mention that my blood pressure is fairly stable, thus I do not have 'orthostatic hypotension', but rather just POTS. Also, I have read past posts on SSRI/SNRI's, and they seem to be hit-or-miss. Has anyone had luck with SNRI's? If so, what type of POTS do you have (ie. does your blood pressure drop? Do you have high norepinephrine? Hyperadrenergic?) I am quite confused, because in the article, "The postural tachycardiasyndrome: When to consider it in adolescents" by Blair Grubb (http://www.dynakids.org/Documents/pots_article3.pdf), effexor (venlafaxine) is used in both 'Partial Dysautonomic' and 'Hyperadrenergic' POTS. Wouldn't an SNRI harm a patient with hyperadrenergic symptoms (as the norepinephrine is high already)? Utterly confused...

Firewatcher- I had the same experience with leg strength. I lost my leg strength suddenly when the POTS symptoms occurred (and subsequent diagnosis later). For some reason, about 2 years after the onset of my symptoms, I started to regain my leg strength. I kept up the same exercises during this 2 year time frame, and just started getting stronger all of the sudden. My advice is to keep up your exercises- because you never know, you just might start gaining strenght at some point in time. And if you give up your exercises, this gain in strenght is not likely to occur (ie you are not working out, so your body will not produce muscle). I highly suggest calf exercises with weights. I also suggest other weight exercises- such as squats, lunges, etc. On top of this, I found that working out with a recumbent bike was highly effective. I have not yet tried a rowing machine, so can't comment on that. I truly believe that the rebuilding of my muscles has lowered my heart rate significantly, and lowered the severity of my POTS symptoms (aside from flushing, as stated in my flushing post). Also, diet is key if you are rebuilding muscles- so make sure you get enough protein and carbs. Eating healthy seems to help POTS in general, but don't surpass the carbs, as is common with 'diets'! Anyways, you probably already knew effective 'POTS' workouts, but I just wanted to give some input. I think the biggest help for me has been the recumbent bike, lifting, and daily 30 minute walks. And if you manage to sweat alot during a workout, adjust your salt intake accordingly (ie add more).

Autonomic dysreflexia (hyperreflexia) is something that has been brought up before. A neurologist at UCSF ruled it out because I do not get headaches, I do not have any sweating associated with the flushing, nor do my pupils become dilated. I have not had any spinal chord injuries either, but don't recall going over this fact during my appointments with the neurologist. This is something I will keep in mind, however, as it is somewhat similar to what I am experiencing- and obviously, not everyone has the exact same symptoms (I.E. POTS patients). Luckily the endocrinologist I recently saw checked my dopamine levels, which I am awaiting the results of. If these come back positive it would be an indication for pheo/autonomic hyperreflexia. Thanks firewatcher for this info! Autonomic hyperreflexia is interesting- while researching it, I noticed that it can also cause orhtostatic hypotension. I wonder if any one on this forum has this but does not know it (from what I read, many doctors are oblivious to it).

Great catch issie, thanks for the information. It is very generous of you to perform this research on our behalf! After looking at some websites describing dermatomyositis, I don't believe this is what I have. It is an interesting catch on your part, however, and I appreciate all the input. And when time allows I will further look at this disease- just to make sure my initial impressions are correct. Also, I asked my doctor about the norepinephrine- and he doesn't believe elevated levels of norepinephrine would cause flushing. In fact, norepinephrine causes vasoconstriction. This, and my other test results ruling out pheo, still excludes a pheo diagnosis for me.

I had leg weakness when my symptoms began- for no particular reason! And then, for no real reason (I had been exercising/lifting regularly all the time- even when my leg strength decreased), I started gaining strength back in my legs about 2 years later. Thus, the purpose of my post is to point out that there is always hope in terms of regaining leg strength. I think some of the most effective ways for someone with POTS to regain leg strength are calf work-outs and recumbent bikes/squats. It is also important to get plenty of protein throughout the day - in fact, one of the best foods to eat for someone trying to gain muscles before bed is cottage cheese! Many of my friends who lift weights regularly eat this stuff, for the casein-protein it provides. This protein is slowly digested so it gives a sustained release of muscle-building protein while one sleeps. Also, coincidentally, cottage cheese is high in sodium, so it may be a good choice- if you can handle dairy products.

Interesting...I just received some past test results, and my norepinephrine (plasma) was elevated at 1160 (range: basal, 116-310, standing 167-450---or something thereof, don't have the paper with me right now). However, I have been tested for pheo 3x in the past, all were negative with slightly elevated plasma normetanephrine. Thus, doctor's had essentially 'ruled out' pheo in the past.... I have also had CT scans and nothing was visible. Could a norepinephrine level of 1160 be the cause of some major flushing (and POTS, not to mention)? I should note that I was sitting during the testing, but had not been resting for 30 minutes prior or anything, as is suggested in some readings. p.S. Great video!

It seems that many pots patients have low serotonin levels. Mine, however, are high (serum around 350-400, normal range up to 220). As a result of these "slightly elevated" levels, a thorough workup for carcinoid syndrome was performed (octreoscan, CT, 5HIAA, etc.)- which was negative with everything except slightly elevated serotonin levels. Anybody else have high serum (blood) serotonin levels? And could Pots be a contributor to this (or vice versa)? Any thoughts are appreciated.

Songcanary- I have experienced significant improvement over the past 2 years since being diagnosed with POTS. I had to drop out of school and was having trouble getting around, even considering getting a wheel chair at one point. The doctors tried me on many drugs, all to no avail. The only thing that has helped is leg work outs with weights (which I did prior to my illness), recumbent biking, salt loading/water (using sea salt), and a bit of luck I suppose. I should note that I was diagnosed when I was 20, so this may have played a role? But I was far done with growing by the time I was 16. I am now back in school and doing considerably better, apart from the terrible skin flushing I get. But this may not be related to POTS. I think another part of my recovery was learning what hurt me and avoiding it (i.e. bending over, stairs, etc.).

Another aspect I have been contemplating is whether or not niacin, in the food form (not taken as a supplement) can cause flushing? This has been hard to find any research on, and it was actually suggested by an allergist whom responded to my doctors question regarding the causes of hot, dry flushing. My doctor's suggestion was to take aspirin, uncoated, at 325mg once a day (which I do occasionally anyways, to dim the pain of the burning flushing-not sure if it helps though. I plan to keep a 'flushing log' and try this out as well. Has anyone ever heard of a niacin flush caused from the niacin present in food sources? Is this in fact possible? Thanks again for all the suggestions, I appreciate them.

Mack's mom- thanks for the compliments. I have come to realize how important one's health really is, which is something I had taken for granted prior to being diagnosed with POTS. Yes, tryptase was checked after flushing, but I'm not sure about methylhistamine (blood). I think the methylhistamines have only been checked with 24 hour urines. I wanted a 4 hour urine after flushing, but my labs were unable to do this test. Does your blood tryptase become elevated after a flushing episode? My doctor was in contact with Dr. Robertson at Vanderbilt, and he also suggested the H1/H2 combo a while back, despite my negative test results. My flushing is strictly on my upper body, with what is essentially a cut-off line on the middle of my chest. I typically only get the flushing, as you described. I've never had hives or any anaphylactic episodes. Rosacea has been considered, but every doctor I have seen has said it wasn't this. though over time prolonged flushing episodes can lead to rosacea. I have already been getting a good amount of skin damage from the flushing, so if it continues I will develop rosacea. My flushing occurs primarily on my neck and chest, with some on my face. It can burn pretty badly and my skin gets hot, but no sweating is present (thus the neurologist thinks it's not neurological). It is brought on by exercise, eating, concentrating (as in school...), talking, heat, sunlight, emotion, ...anything really, and sometimes it is just spontaneous. All of the comments have been of help, so thank you. I already take H1 antihistamines so have added an H2, which I will do twice daily for a week. Do you notice a difference in regards to the type of H1 antihistamine you take? I have allegra and zyrtec. It can't hurt to start the H2 (I get no side effects from H2, at least short term), plus I have a couple of Dr. Appts next week. I am also continuing with the food diary and upping the anty on this. Any other suggestions are welcome. Thanks again.

jonathonireland- Good catch with the octreotide. My serotonin levels have been slightly elevated, but doc's typically say it is insignificant. If the serotonin were the cause of my flushing, octreotide would help greatly (octreotide is also a treatment for flushing/diarrhea seen with carcinoid syndrome, which causes high serotonin levels). I actually tried octreotide and had some strange sort of reaction, so the doc pulled me off of it. Octreotide should help you with hypotension- but then again, so would other drugs. Issie- thanks for the points regarding food allergies, I had never given it that much in-depth thought, and am glad you bring this up. In regards to the salt, it simply comes down to which types of salt have not been processed (sea salt and himalayan). These salts contain more minerals and trace elements, which- as you said, are eliminated by the processing of normal salt products. Whether or not these are significant are up to debate- but in my case, I have found them to be significant. I am also looking into trying himalayan salt. For me, adding salt to my diet was not enough. In fact it made little difference. I started noticing a difference in HR/symptoms (perhaps coincidentally, but I don't think so) when I began mixing the sea salt with water/orange juice/gatorade. I usually mix 1/4th a tsp, twice daily, to give me an extra 1200mg of sodium daily. I keep up with salt in my diet, take 2-4 thermotabs (each tab has 180mg sodium), and drink plenty of water. Of note, I also take a potassium supplement because my potassium levels were borderline low (3.9). My theory of why I benefit from taking the salt with liquid is that it is more easily absorbed by the body, but this is just a guess. My last urinary sodium levels were only at 170 (normal range: 150-220) despite consuming large amounts of salt. Issie, I hope you can gain your leg strength back as well. I have had my sex hormones checked a few times- because the first time they were out of balance for a male my age, but have since normalized. My norepinephrine has been slighlty elevated at times, but normal at others. I tried a few beta blockers but couldn't handle them due to horrific fatigue. Based on your suggestions, I am going to amp up my details with my food log, and look into 'small' things like vitamin fillings and what not, thanks for the suggestion. Mack's Mom- I have read a number of your postings in the past, and really did wonder if I could be experiencing MCAD. My blood work has been all done after flushing episodes, but my urinary methylhistamines have all been 24hr. The only thing that really showed up in testing was a high Ige level (104), probably due to a cat allergy I had when I lived back home earlier. But the flushing began before I moved back home, thus the cat allergy is not likely the cause of it. I have tried combining the H1/H2 but did not notice any significant reduction in flushing- how long did it take before you noticed a reduction? I am now considering re-trying this, for a longer time frame, as I already have the supplies, and don't experience any real side effects from allegra/ranitidine. Thanks for this info. Green tea is interesting- I am definitely going to try this. I am glad the H1 and H2 have worked out for you and your son-- how much of a role do you think the singulair played? And how long did it take for singulair to work? Thanks for the info, it is much appreciated.

Issie- thanks for the response and for your information regarding food allergies. I have been very careful with my food types, especially in terms of msg and tyramine, but have had little success with pinpointing any foods I could be sensitive to (keeping a food diary and all). I still think that food may play a role in my flushing and continue to keep this food diary, while eliminating msg/processed foods, as many on the forum have reported them to worsen their symptoms. You are correct- I was not overdoing exercise at the time, but rather sticking to my regular routine (when I lost the strength in my legs). This was a good thought on your husband's part though, and I'm glad you brought it up. I am very happy to be gaining this muscle back, and truly believe it has helped me improve my heart rate and symptoms. Some doctors will compare your muscles to being a second heart, as they pump your blood nearly as much as your heart does. I was practically bed-ridden just a few months ago and was considering a wheel-chair to return to school, but now that will not be necessary! I found that the recumbent bike and taking long walks has been highly beneficial, along with the weight lifting. I used to try to run- but this was bad, as my heart rate would rise too fast and my body would crash afterwards. I know my problem is not a 'deconditioned heart' (as Dr. Levine believes is the cause of POTS), as I have had echocardiograms and it is slightly enlarged, which was blamed on the athlete aspect of my past. I forgot to post in my last message, the flushing is strictly upper body, meaning chest, shoulders, neck and face. It's interesting that B-complex would help with your flushing. I have had many many hormones checked, including B-vitamin levels (specifically B-12), which have been normal. If the B-complex helps you I suppose you can conclude your flushing is NOT due to niacin (B-vitamin known to dilate and cause flushing). In terms of salt- I have experienced a HUGE difference between normal salt and sea salt. This has been discussed in many other posts, so I won't go into the theories of why. Thanks for the post and I hope sea salt/himalayan salt works out for you.

Hi all, It has been quite a ride for me to become diagnosed with POTS. I was a healthy 20 year old male in college, when all of the sudden I began having some extreme flushing episodes. These episodes drove me to the doctor's office, where they were quick to order numerous blood tests. Long story short, my serotonin levels were slightly high, and after a CT scan a 'tumor' was found in my chest- thus I was recommended for surgery, under the suspicion of carcinoid/carcinoid syndrome. The surgery went well and the tumor turned out to be benign- in fact, there was no tumor, but rather just an abnormally shaped thymus gland! So essentially the surgery was pointless, but on a brighter note I did not have cancer. After surgery a more subsequent work-up was done for my symptoms and it was found that my heart rate increased upon standing by about 38 bpm, thus POTS was diagnosed. By this time my symptoms were so severe that I had dropped out of college. Recently, I have returned to college, and am doing okay (aside from intense flushing, described below). POTS-wise, my symptoms have greatly subsided, as has my standing heart rate. It is strange that in the past few months I have become better so quickly. I hope this is not simply a period of temporary remission as posted in earlier forum topics. I should note that in my case of POTS my blood pressure does not drop significantly. After trialing many drugs, I have come to realize that I get the best relief (and greatest reduction in HR)is achieved by supplementing with sea salt, the correct exercise techniques, and of course water. I find that my body better 'absorbs' the sea salt when I mix it in with water or orange juice/milk/gatorade. I had supplemented with salt before (by eating high-salt foods) and found no relief, yet when I mix it in with water I am better both subjectively (symptoms) and objectively (reduction in HR. I also get the same effect with thermotabs, which are simply buffered salt tabs. In terms of exercise, I have found a recumbent bike to serve my needs greatly. I try to get in 25-30 minutes on the recumbent while keeping my HR under 150. I also work out alot (as I did prior to diagnosis), and have been building my leg muscles to how they were pre-POTS. I do a lot of calf work and squats/other leg exercises with weights twice weekly. Funny enough, when I started to get my POTS symptoms, my leg muscles simply atrophied- for no apparent reason. I was working out and carrying on with my normal routine, but my leg muscles kept getting smaller, and my squat max went from 275 to 145 in a matter of a month- without reason! The atrophy is proven by a serum blood test of CPK, or creatine phosphokinase (sp?), which was elevated at the time but has since dropped. Recently I have been gaining strength back, which is something I could not do before. Through these practices (sea salt w/ liquid, correct exercises, and water) I have been able to get my standing HR down from 110 to usually in the 90's, sometimes as low as 70's. I have been able to return to school and lead a fairly normal life. However, there is still one terrible symptom: the FLUSHING (a burning, hurting kind of flush)! My flushing has been worse and worse since the onset of my symptoms. I have been tested for mastocytosis (numerous times, with all different methylhistamine, tryptase, etc), carcinoid syndrome (still have slightly elevated serotonin, but all other numbers normal, including 5HIAA and negative scans/octreotide scan), pheochromocytoma, etc. Nobody seems to be able to figure out the flushing. Any thing I do, I mean anything, brings it on. It has actually become a painful experience, primarily b/c of the burning that the flushing induces. I know there are numerous posts regarding flushing, but has anyone found relief yet? I trialed a large antihistamine regimen, but it did not help, just dried me out (and tests negative for masto). I have also tried beta-blockers, but they did not help and made my POTS symptoms worse. I would be interested in hearing if anyone has had relief in regards to the flushing. I have been following these forums for a while- just never posted, thanks for any input.