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About basktbal22

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  1. No, sorry, I use the ones at the gym and they are hugely expensive.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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...
  9. 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).
  10. 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).
  11. 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.
  12. 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.
  13. 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!
  14. 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.
  15. 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.).
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