HopeSprings Posted July 7, 2012 Report Share Posted July 7, 2012 Last time I saw my Dr. I told him I didn't think the IV saline did anything. He said to have my BP taken before and after and see if BP went up. I went today for the 4th time - 1 liter over 2 hours. My BP was 97/58 before and 84/43 after. The nurse was surprised. I don't get it.... I didn't urinate a lot. Where did this fluid go and why did it do nothing for my blood pressure? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 8, 2012 Report Share Posted July 8, 2012 Saline is about symptomatic relief. In most it helps quite a lot. But 1 to 2 litres at a minimum. BP readings in POTs are often meaningless. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 8, 2012 Author Report Share Posted July 8, 2012 Rama - of course my objective is to feel better. What good is a raised BP if my POTs symptoms aren't improved. I'm just wondering why I don't have at least a normal response (a BP boost) to the saline - I would think a liter is enough to do something. BP shouldn't be dropping. Was trying to figure out if there is some physiologic explanation. Oh and I was up all night urinating. I guess a delayed response? Nothing ever makes sense. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 8, 2012 Report Share Posted July 8, 2012 Hi Naomi!I have actually stopped my saline infusions as I was having great difficulty even getting them started (no vein access, veins collapsing, fluid overload, possible porta cath insertion (decided against that)) and they made me feel worse also with lower BP. My nurse said she thought it was because the saline was so cold and my core was dropping because of it. Are they giving you refrigerated saline or room temperature? It may make a difference for you......Bren Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 8, 2012 Author Report Share Posted July 8, 2012 Hi Naomi!I have actually stopped my saline infusions as I was having great difficulty even getting them started (no vein access, veins collapsing, fluid overload, possible porta cath insertion (decided against that)) and they made me feel worse also with lower BP. My nurse said she thought it was because the saline was so cold and my core was dropping because of it. Are they giving you refrigerated saline or room temperature? It may make a difference for you......BrenOh interesting, Bren! I don't know if the saline was cold or not, but that's a really good thought. The infusion center was very cold though. I mean it was like 100 degrees here yesterday and I needed a blanket at the hospital. So your BP dropped too - wow. I'm sorry this didn't work out for you either. I really liked the idea because it didn't involve medication, which I am so sensitive to. I guess we're just difficult. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 8, 2012 Report Share Posted July 8, 2012 The heat doesn't help thats for sure ......lol yeah! we are high maintenance......my specialist now thinks that peripheral neuropathy may actually be behind my autonomic dysfunction so if that's the case the infusions won't make much of a difference I think. That's why I think so many of us don't see much improvement with the saline...there are so many different reasons for why we are affected in the first place.....I get so sick of the band aids I would really love to find the cause so it can cure the effects I notice you have SFN do they figure that is what's causing your POTS? Bren Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 8, 2012 Author Report Share Posted July 8, 2012 ......my specialist now thinks that peripheral neuropathy may actually be behind my autonomic dysfunction so if that's the case the infusions won't make much of a difference I think. I would really love to find the cause so it can cure the effects I notice you have SFN do they figure that is what's causing your POTS?I'm right there with you, Bren. I don't want a band-aid either (not that I've had any luck finding one anyway). I think without finding the underlying cause, any treatment we try is a shot in the dark and we could actually make things worse. I'm not sure if my neuro believes SFN is the cause - though he tried pretty hard to find out what was causing it. I feel pretty convinced this is the underlying problem - but without knowing what's causing the SFN, it seems to be just another dead end. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 18, 2012 Report Share Posted July 18, 2012 Blood pressure may decrease in excessive vasoconstriction or hypovolumia. here the increased BP may be reflex adaption. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 18, 2012 Report Share Posted July 18, 2012 If your POTs was caused by SFN - and despite what you read this is a hypothesis rather than an established etiology, since SFN may be the result of impaired blood flow through small vessels as a possibility - then increased volume would probably help, as it would allow the compromised small vessels to dilate more and until there was excessive small vessel/capillory pooling or leakage out of vessels there would be more volume to improve the compromised circulation. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 18, 2012 Report Share Posted July 18, 2012 imagine POTs with neuropathy as a balloon - the human body - where too much water goes into specific areas (hands, feet or small vessels) and this means less returned to heart and less goes to brain. With a saline infusion you get a sudden increase in available blood plasma. Therefore there can still be more water in specific areas but also a top up of blood that allows more to return to the heart and brain = improvement in symptoms. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted July 18, 2012 Report Share Posted July 18, 2012 I agree w ramakentesh that BP is not a good measure for most of us but the increased plasma volume helps w symptoms. In Hemodynamic lab at Cleveland Clinic my total cardiac output decreased by 42% on sitting upright. There was no change in my BP. That is crazy and doesn't make sense.I've found the saline to be useful when I'm having a bad flare. Wouldn't want it as a regular Rx. I'm actually going in today and Fri for more. Seems to help relieve symptoms temporarily. Good note about checking temp of saline. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 18, 2012 Report Share Posted July 18, 2012 Saline iv's didn't help me either. I used to have a lot of problems with veins collapsingand pain with iv's but the paleo / wahls diet (gluten free + + ) AND making sure that I'm thoroughly watered andsalted up priorto these has helped. I wasn't told that I have sfn but I wouldn't be surprised. I'vehad so many neuro symptoms including ataxia. I have a ton of allergies too tho. I'm experimenting with a parasite cleanse now to see if it helps. Fwiw, I was surprisedto find out that himalaya liver care stopped my neuro reaction, vertigo, to this cleanse. I'll betaking a closer look at why once I'm up to it.Tc .. D Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted July 18, 2012 Report Share Posted July 18, 2012 Rama, you say "BP may decrease in excessive vasoconstriction". Actually, excessive vasoconstriction causes an INCREASE in BP. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 18, 2012 Author Report Share Posted July 18, 2012 If your POTs was caused by SFN - and despite what you read this is a hypothesis rather than an established etiology, since SFN may be the result of impaired blood flow through small vessels as a possibility -Wait, are you saying SFN may be a complication of POTS and not the other way around? Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 18, 2012 Report Share Posted July 18, 2012 not sure about that as I have been having nerve issues off and on for years even before POTS onset.....I have always had poor circulation (2 pound preemie at birth)...as a young child I was diagnosed with Raynauds...... so I am more apt to believe that over the years this chronic poor circulation has some how played a part in my illness Quote Link to comment Share on other sites More sharing options...
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