issie Posted July 22, 2016 Report Share Posted July 22, 2016 http://nutritionfacts.org/video/sodium-and-arterial-function-a-salting-our-endothelium/?utm_source=NutritionFacts.org&utm_campaign=c537b7af50-RSS_VIDEO_DAILY&utm_medium=email&utm_term=0_40f9e497d1-c537b7af50-23372221 I've questioned the use of salt in POTS almost from day one. I just can't see how, long term, it's good. For me it wasnt. Here are some old threads I started years ago. (I have since refined some of my thoughts as my knowledge increased.) http://forums.dinet.org/index.php?/topic/16668-renin-aldesterone-the-article/ http://forums.dinet.org/index.php?/topic/15830-more-on-aldosterone-and-renin/ http://forums.dinet.org/index.php?/topic/15806-some-out-of-the-box-thinking-need-some-feedback/ http://forums.dinet.org/index.php?/topic/15869-cortisol-aldosterone-hormone-support-would-it-help/ Something to consider. We need our veins and arteries functioning to their best level to carry our blood and oxygen to where it needs to go. Damage vein function and/or make arteries stiff and things are NOT going to work properly. We may increase blood volume, but it may not help but hurt us in the long run. I have questioned many of the drugs used to treat POTS. They are masking the issues, not getting to the core problems. I've been saying for years it's autoimmune and inflammation problems. Thankfully science is proving just that. Issie Quote Link to comment Share on other sites More sharing options...
yogini Posted July 23, 2016 Report Share Posted July 23, 2016 I dunno - salt helps me a LOT and my doctor told me not to worry about the salt warnings for me. And I definitely don't have autoimmune issues or inflammation. We are all so different - it's best for each person to decide after talking to their doctor. Quote Link to comment Share on other sites More sharing options...
issie Posted July 23, 2016 Author Report Share Posted July 23, 2016 According to the article........quote: even in people whose blood pressure is unresponsive to salt intake, they still suffer significant suppression of their artery function. So, even independent of any effects on blood pressure, salt hurts our arteries, and that harm begins within minutes of it going into our mouth, for our major arteries, and even our itty bitty blood vessels. So even if we exclude whether or not it helps our blood pressure - it damages our veins and arteries.. Issie Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 24, 2016 Report Share Posted July 24, 2016 A problem with salt (overload), that was brought to my attention by my EP, is that too much salt can cause a potassium imbalance--it can cause the kidneys to waste potassium. I don't know a lot about it other than this is what he told me--and I have a tendency towards low potassium. He said, more salt, but in moderation. It is confusing to know what to do sometimes. Added salt has helped me too--greatly improves my symptoms at times. As yogini said each person is a little different. Good to discuss w your doctor/s. Quote Link to comment Share on other sites More sharing options...
yogini Posted July 24, 2016 Report Share Posted July 24, 2016 (edited) I think for many people with POTS, our blood pressure is lower than normal and it Is responsive to salt - so the sentence you quoted doesn't apply. Arterial damage and strokes are caused if you have high BP over a long period of time. If you are just brining your BP up from low to normal through salt, there should not be a risk. I have been assured by my doctor that high salt intake is appropriate for me. Many doctors not only prescribe salt for POTS patients, but florinef, which makes us retain even more sodium to drive up our blood pressure. Unless there was a study saying extra salt is bad for people with clinically low blood pressure, I would not be concerned about having extra salt for myself. Edited July 24, 2016 by yogini Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 24, 2016 Report Share Posted July 24, 2016 As an EDS patient who has flacid vasculature, I'm not sure it's a bad thing that my arteries "don't relax" due to the salt. We (my docs and I ) constantly search for ways to keep my vasculature constricted. Salt helps me a lot and after hearing this video, this could actually be a benefit for me and not a bad thing. This video is aimed at the general population and I would be hesitant to make changes to my salt intake based on this information and knowing that the way POTS patients react to treatments can often be much different than the general population and even to each other. Quote Link to comment Share on other sites More sharing options...
issie Posted July 24, 2016 Author Report Share Posted July 24, 2016 Arterial stiffness would create issues with blood flow. The arteries would not constrict and contract properly to push blood up to the heart and head, like we need for less symptoms. Salt may help with blood volume due to blood volume expansion. But....... If our tachycardia is a response to help pump blood to the vital areas (head and heart) is further supressed with meds - when it's a body compensation to move blood out of the extremity, and up. Then if you have veins and arteries compromised by arterial and vein "stiffness" due to salt (as this article suggest) - you have more issues than what you started with. My POTS doc at Mayo told me not to use salt. I'm so glad he notices the different subset types and apparently is aware that it's not good for all (I question if for anyone). I have EDS too. Florinef was horrible for me. Drugs that vasoconstrict were also. And extra salt was not only not good or a help for my POTS but helped to contribute to kidney issues, heart problems and severe edema. (Yes I tried it before my subset type was determined.) And yes, too much salt will imbalance potassium and magnesium and other electrolytes. As stated above, we are all different. But just because a doc "assures" you something is "safe" - doesn't mean science will agree with him. Issie Quote Link to comment Share on other sites More sharing options...
issie Posted July 24, 2016 Author Report Share Posted July 24, 2016 http://www.bloodpressureuk.org/microsites/salt/Home/Whysaltisbad/Saltseffects Here's an even better article showing what high use of salt can do to the kidneys, brain, heart and arteries. They are somewhat attributing some of the ill affects to higher blood pressures. But if some are normally low blood pressure and raising it - would that be considered high blood pressure for that person? Some salt is good, but high levels of salt......I question. Issie Quote Link to comment Share on other sites More sharing options...
issie Posted July 24, 2016 Author Report Share Posted July 24, 2016 https://www.sciencedaily.com/releases/2015/03/150310160033.htm Quote: Finally, sodium may also affect the sympathetic nervous system, which activates what is often termed the fight-or-flight response. "Chronically elevated dietary sodium may 'sensitize' sympathetic neurons in the brain, causing a greater response to a variety of stimuli, including skeletal muscle contraction," Farquhar says. "Again, even if blood pressure isn't increased, chronically increased sympathetic outflow may have harmful effects on target organs." _____________ I've scanned Google and so far, on page 22 and it keeps going. High salt intake can affect so many organ, brain function, heart, kidneys and endothelial linings of blood vessels and arteries. It affects NO release and is thought to potentially contribute to atherosclerosis, possibly dementia, heart and kidney failure and other things. Appears the raising of volume occurs because the kidneys are overtaxed and can't remove as much sodium as is taken in. That imbalances the electrolytes even further. And as time continues the kidneys start to not be able to eliminate waste products as efficiently. I just can't see how any doc would be able to "guarantee or assure" a patient that they would not have any adverse affect from something so corrosive. We do need a certain amount. But not like POTS people are mega dosing on. To much points to adverse affect. Issie Quote Link to comment Share on other sites More sharing options...
corina Posted July 24, 2016 Report Share Posted July 24, 2016 For me it's like meds that can hurt and help. It's a balancing act. Like with octreotide, it can cause huge problems but for me it helps me function on a much higher level than before I was on this med. Adding salt and fluids helps me a lot, I have always craved salt, I bet for a reason! I think it's a good thing to read and research but it's a personal choice to weigh out the pro's and con's of what works best in your personal situation. Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 24, 2016 Report Share Posted July 24, 2016 That's a good point, Corina. I don't doubt the science in these papers, but like anything else, it's a cost-benefit analysis we each have to make for ourselves. For example, I hate living on cortisol replacement steroids but I'm simply not able to function without them. Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted July 25, 2016 Report Share Posted July 25, 2016 Yes I agree it's a balancing act and each person has to make their own informed choices with their providers. Issie you mentioned raising normally low BP and wouldn't that be high BP for that person then. No not necessarily. Last winter I got a cold and my BP tanked to the point that my MAPs were in what could be considered danger zone. BPs of for example 67/39 and resistant to everything including 30 mg of midodrine per day, fluids, Mestinon etc. what eventually helped was 1. Time and 2. Homemade salt capsules. I guess my point is there is a time and a place and it is a personal choice. We all have to walk a line. i sure appreciate your research and the point you are trying to make. For me right now it comes down to cost vs benefit. My cardiologist also seems to have much more immediate concern about my current BP than my arteries. Best wishes ? Quote Link to comment Share on other sites More sharing options...
issie Posted July 25, 2016 Author Report Share Posted July 25, 2016 1 minute ago, Kaitlyn said: Yes I agree it's a balancing act and each person has to make their own informed choices with their providers. Issie you mentioned raising normally low BP and wouldn't that be high BP for that person then. No not necessarily. Last winter I got a cold and my BP tanked to the point that my MAPs were in what could be considered danger zone. BPs of for example 67/39 and resistant to everything including 30 mg of midodrine per day, fluids, Mestinon etc. what eventually helped was 1. Time and 2. Homemade salt capsules. I guess my point is there is a time and a place and it is a personal choice. We all have to walk a line. i sure appreciate your research and the point you are trying to make. For me right now it comes down to cost vs benefit. My cardiologist also seems to have much more immediate concern about my current BP than my arteries. Best wishes ? I hear ya. Desperate situations call for desperate measures. Issie Quote Link to comment Share on other sites More sharing options...
yogini Posted July 29, 2016 Report Share Posted July 29, 2016 (edited) I agree with issie that we should question the doctors advice and standard advice for POTS patients to see if it applies to us personally. For me, the recommended exercise protocols don't work, so I had to find another way to exercise. That treatment wasn't appropriate for me, but I wouldn't want my personal experience to affect another person's decision. In fact I think everyone SHOULD look into the exercise protocols because they might help others even though they didn't help me. And I feel the same way about meds that didn't work for me. Our condition is already very hard to treat - salt is one of the most helplful things for many - and I wouldn't want to discourage anyone from trying it. Edited July 29, 2016 by yogini Quote Link to comment Share on other sites More sharing options...
yogini Posted July 30, 2016 Report Share Posted July 30, 2016 On July 24, 2016 at 2:57 AM, issie said: http://www.bloodpressureuk.org/microsites/salt/Home/Whysaltisbad/Saltseffects Here's an even better article showing what high use of salt can do to the kidneys, brain, heart and arteries. They are somewhat attributing some of the ill affects to higher blood pressures. But if some are normally low blood pressure and raising it - would that be considered high blood pressure for that person? Some salt is good, but high levels of salt......I question. Issie I don't think that bringing BP or blood volume from low to normal would be harmful. It could in fact be unhealthy to have low BP - basically many of us are suffering from all of our dysautonomia symptoms because of low BP. When my BP is boosted, I don't have a headache, I have more energy, I can exercise more, etc. It's like if you have a thyroid deficiency - you take pills to bring your levels to normal. You could find a study saying that thyroid pills are dangerous for healthy people -- but that study wouldn't be relevant for people with a thyroid deficiency. In fact it might be dangerous not to take the pills for that group. Medical studies are very specific to the groups covered by the studies. That's why each of us needs to get advice from our own doctors - to determine what applies to our particular situation. Quote Link to comment Share on other sites More sharing options...
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