yogini Posted January 27, 2012 Report Share Posted January 27, 2012 Most people with POTS are not hypovolemic. Some are -the only way to know for sure is to get a blood volume test. I've never had the test, but I'd bet I am not hypovolemic. I'm not hyper POTS either. But I did feel MUCH better from saline the one time I had it. For whatever reason (I don't fully understand the mechanism), enough blood does not go to my head, and saline helped with that. Quote Link to comment Share on other sites More sharing options...
jangle Posted January 27, 2012 Report Share Posted January 27, 2012 POTS IS SO CONFUSING!But you know what, I don't even care cuz my (well not mine but the one from the case study I read) vitamin D theory is going to work out and we're all going to get better! okay!!!! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 27, 2012 Author Report Share Posted January 27, 2012 Some work suggests that only a portion of POTS patients are hypovolumic (specific to low flow POTS as an example) - but there is a number of studies that suggest the bulk of POTS patients are (jacob i believe). Some were found to actually have dynamic circulation and increased blood volume in one study. A point often raised in the literature is that POTS patients have reduced thoratic blood flow and cerebral hypoperfusion (perhaps) yet normal renin / ald responses to this which is also unusual.Hypovolumia does not have to be the cause of POTS - it may be a symptom and there is research going on right now in this direction. But that may not actually even be why POTS patients improve on IV saline - there may be a completely different mechanism at play here that no one has ascertained yet. It could just be that it improves thoratic hypovolumia from redistributive blood pooling (normal flow), etc.My point is that its pretty hard to definitively say how many POTS patients are hypovolumic based on contradictory findings in the research. Sympathetic activation itself results in hypovolumia to a small degree in other conditions.That being said I live with signs and symptoms of chronic dehydration ever day. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 27, 2012 Author Report Share Posted January 27, 2012 Your right jangle - if someone gave me a way of getting saline in easily tomorrow and I could have it daily You would probably never see me on these forums again and I couldnt care less if pots was caused by aliens abducting me and rearranging my blood vessels Arm chair speculation makes me feel like i know whats going on but in reality I cant test any of my ideas so its probably a waste of time Quote Link to comment Share on other sites More sharing options...
jangle Posted January 27, 2012 Report Share Posted January 27, 2012 Your right jangle - if someone gave me a way of getting saline in easily tomorrow and I could have it daily You would probably never see me on these forums again and I couldnt care less if pots was caused by aliens abducting me and rearranging my blood vessels Arm chair speculation makes me feel like i know whats going on but in reality I cant test any of my ideas so its probably a waste of time hahaha. Of all the things that can cause POTS, I think I'd most prefer the alien abduction one.Rama you mentioned Saline helps you at least for a day. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 27, 2012 Author Report Share Posted January 27, 2012 Because its intravenous it would need a port and these have some pretty hefty risks with infection and etc. Maybe I could just inject it in slowly LOL. Id love to mate trust me but probably not. its pretty invasive and because my veins are pathetic they usually collapse like a grannies...id recommend it if you want a break from a bad patch. Works better than just about anything else ive tried (and ive tried lots). Quote Link to comment Share on other sites More sharing options...
POTSMama Posted January 27, 2012 Report Share Posted January 27, 2012 This is just meant to be a provoking thought. I have NO doubt that saline really is helping you guys. I struggle with the hypovolemia theory for one reason. My pots started when I was 31 weeks pregnant. When you are in your third trimester your blood volume is 5 x that of a normal no pregnant volume....I often hypothesize that us hyper pots are not truly hypovolemic....Ah, but that's the thing - - I'm hyper pots and I felt completely wonderful during my pregnancy (wish I'd had more than one, but I was pregnant at 40, so adopted after that), but I felt awful both before and after my pregnancy, and I feel great the rare times I've gotten IVs. I'm still not sure if the pregnancy making me feel so good was hypovolemia or something hormonal, but right after the delivery of my daughter, I really crashed hard and had severely cracking/bleeding fingertips And now that I have developed MCAD, I'm having cracking/bleeding fingertips again - - who knows what is going on? It's apparent that even within a "class" of POTS (e.g. hyperadrenergic), we are not all the same. Now that I have also developed MCAD, I am finding that even patients with POTS/MCAD do not all present with the same onset course or symptoms. I think POTS is a very heterogenous symptom (I think of it now as a symptom rather than a disorder) with more than one cause, which of course makes it hard to come up with treatments that work for everyone. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 27, 2012 Report Share Posted January 27, 2012 I have heard that from others as well. I believe some people have had relief during pregnancy because it is suspected pots is autoimmune. I think what is helping them is not an increase in blood volume but is instead the pregnancy putting the pots into remission. My RA went into remission during pregnancy and for the first time since I had it I had zero joint pain and all my swelling and swollen glands went away. It was wonderful! Quote Link to comment Share on other sites More sharing options...
McBlonde Posted January 28, 2012 Report Share Posted January 28, 2012 For the doctors like Dr. Rowe that use saline IVs as part of their protocol for a subset of patients..... Does anyone know how much and how often? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 28, 2012 Author Report Share Posted January 28, 2012 Id like them daily thanks...Most POTS is thoratic hypovolumia - so even if there isnt total hypovolumia there is nearly always thoratically. Quote Link to comment Share on other sites More sharing options...
Wendy C. Posted January 29, 2012 Report Share Posted January 29, 2012 Hmmnn...I have noticed a slightly improved feeling from using saline nasal spray to combat a dry nose - before I even knew what POTS was. More of the sublingual theory?Rama, thanks for mentioning the stuff about being able to see your veins while on saline. I have been noticing differences in the veins on the tops of my hands that do correlate to how hydrated I am each day. Today, I had my first tiny dose of Midodrine and my veins looked full and plump for a few hours. I remember noticing plump/chunky veins on my hands last summer and thinking, "oh no - am I getting old lady hands already?", but now I wonder if I was just nicely hydrated back then, as opposed to the flat veins I have most of the time now. I also get the comments about my veins collapsing easily and phlebotomists always saying I am dehydrated. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 29, 2012 Author Report Share Posted January 29, 2012 I have heard that from others as well. I believe some people have had relief during pregnancy because it is suspected pots is autoimmune. I think what is helping them is not an increase in blood volume but is instead the pregnancy putting the pots into remission. My RA went into remission during pregnancy and for the first time since I had it I had zero joint pain and all my swelling and swollen glands went away. It was wonderful!Quite possible. There could also be an autoimmune mediated response against some the receptors or substances that regulate blood volume. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted January 29, 2012 Report Share Posted January 29, 2012 What Carol said is so true, it really looks like POTS is a symptom/syndrome and not the disease itself - something is causing POTS, be it autoimmune, hypovolemia, NE, etc...I wish more doctors would look for the cause and taylor treatment to it, instead of trial and error meds. And Julie - my first pregnancy did the same thing, complete remission! Lasted through nursing. Second was a nightmare, but now that I'm nursing, I know I am retaining fluids - I can see my veins (Wendy and Rama) and am not peeing constantly. I gave 20 tubes of blood the other day with no clotting in the tubing, before they struggled to even get a single tube out of me. I wonder if I can just keep pumping until menopaus (sp?)? I still feel terrible, but I know I am hydrated, and my BP is much higher than normal (unless I stand up for a minute or two). I don't want to know what will happen when I wean my baby. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 29, 2012 Author Report Share Posted January 29, 2012 I think there is some amazing research going on right now that is quite close to demonstrating the primary etiologies of POTS in different patients. Much closer than you may suspect. But it is true that this has not translated into better treatments.As an example - one medication that is frequently prescribed has about 20 other similar medications that do the same thing, yet only one is ever prescribed for POTS.The fact that saline helps doesnt prove anything automatically about anyone's POTS and I dont think i was saying that it did. it may give some clues, but as I said above most of the time POTS is thoratic hypovolumia from lack of blood volume, pooling in the stomach or pooling eslewhere or at least at the moment appears to be, so increasing plasma volume even if its normal should help.Some have low blood volume - this appears to be established. Perhaps I am one of those, but that doesnt to me automatically mean that Im saying my condition is not autoimmune. low blood volume might be a consequence of other mechanisms. Although I think im starting to repeat myself here.I always tell people not to make any assumptions about POTS. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted January 29, 2012 Report Share Posted January 29, 2012 I was agreeing with you Rama - I'm usually hypovolemic but nursing is like getting IV fluids for me right now And there is amazing research going on, and more people speaking up to get the word out - hopefully motivating doctors and maybe drug companies who fund much of the research moving. I see an a lot of angry patients on various boards/pages, and they are fighting for treatment, which makes me happy. I wonder what hormone or mechanism that controls nursing switches the flip - or if aldosterone is invoved? I just had all that lab work done, and I think they tested my aldosterone, and I'm wondering if I'll need it re-checked after I stop. You are very knowlegable about the mechanisms of POTS, would love any thoughts if you don't mind. Thanks! (And sorry for hijacking post) Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 29, 2012 Author Report Share Posted January 29, 2012 Sorry - i wasnt arguing just trying to explain my point better Quote Link to comment Share on other sites More sharing options...
puppylove Posted January 31, 2012 Report Share Posted January 31, 2012 I had an endoscopy today and during/ afterwards they gave me saline which I have never had before. Normally after a procedure like that I am super posty from the general anesthesia but after it wore off and they pumped me with saline ( they know I have POTS now) I felt really great! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 31, 2012 Author Report Share Posted January 31, 2012 Did you feel weird in the chest and upper arms? I feel kinda full there after saline. its an awesome feeling Quote Link to comment Share on other sites More sharing options...
puppylove Posted January 31, 2012 Report Share Posted January 31, 2012 Yeah- it did kind of feel like that! And I was so relaxed and eveything was clear. It felt just like before when I didn't have POTS. Too bad it didn't last very long Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 31, 2012 Author Report Share Posted January 31, 2012 yeah it is great but its hard to work out what do to witht he time because you know its going to wear off. I went fishing for four hours. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 31, 2012 Report Share Posted January 31, 2012 Claire, I know that prolactin and oxytocin are involved with the nursing process. Oxytocin is very interesting in how it affects the body/mind. Oxytocin is produced in the posterior pituitary, the same place ADH(antidiuretic hormone) is made. I know some of us have been found to have low ADH. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 31, 2012 Author Report Share Posted January 31, 2012 Low ADH? can you show me the research on that? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 31, 2012 Report Share Posted January 31, 2012 Rama, I guess I should have said, "some of us here...." I have low ADH results and so does Firewatcher(? hope I have the right person), and I believe there may be another person or two here on this forum. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 31, 2012 Author Report Share Posted January 31, 2012 Ive never read that mentioned in any of the research. Wouldnt that indicate diabetes insipidus? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 31, 2012 Report Share Posted January 31, 2012 Yep, but my doctor never did all of the testing that should be done to diagnose DI. I'm hoping that will get addressed in my upcoming appt. I received the meds for it, but since my doctor never mentioned testing my electrolytes as we go, I figured he didn't really have a handle on how to treat this AND monitor me. If I would have true DI, then I would think they would look a little closer at the pituitary. Quote Link to comment Share on other sites More sharing options...
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