ramakentesh Posted January 24, 2012 Report Share Posted January 24, 2012 Just had my first saline infusion of 1 litre today and within an hour I feel the best I have felt in ages. I feel fantastic - like I did before I was sick... if only it would last!!If your ever feeling particularly bad I would highly suggest it! Amazing improvement.last two times Ive had saline i was relatively well so it didnt have as great an impact. Today its just amazing. Quote Link to comment Share on other sites More sharing options...
POTSMama Posted January 24, 2012 Report Share Posted January 24, 2012 The few times I've had saline (because I was in hospital for something else), I also found the effects to be marvelous for awhile. Sure suggests we must be chronically hypovolemic. Glad you're feeling better! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 24, 2012 Report Share Posted January 24, 2012 Why yes it is! LOL This is why I am pushing for a Port! I just got one a week or two ago and felt amazing, but unfortunately it doesnt last too long :/ Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted January 24, 2012 Report Share Posted January 24, 2012 Oooh I want to try it I'm convinced I'm hypovolemic but whenever I get the sickest and most tachy they've refused to give me fluids, so strange, usually they throw fluids at everything. I'd think it's because they're worried I'd react to it, but it's not that because most don't believe I'm actually having reactionsOops, I vented sorry Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 24, 2012 Report Share Posted January 24, 2012 It really is. I want a line but am worried about building up a tolerance/dependence to it. Plus if I'm having a really bad day and need to go in, it gives the Dr.s something to do besides shrug their shoulders Has anyone with a line noticed tapering of improvement after using it for awhile? Also, I have a question, why does saline help so much more than oral fluids? I.e. why are we holding onto saline better than oral fluids? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 24, 2012 Author Report Share Posted January 24, 2012 Id guess that saline wouldnt cause tolerance in the same way as a medication that might down regulate receptors that it acts on, more it just adds plasma volume in a quick way.I wish I knew why drinking does not have the same effect so I could turn that off! Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted January 24, 2012 Report Share Posted January 24, 2012 Rama-must be that we aren't absorbing it orally as well, it's being flushed too quick by our overactive bladders... and I don't know if the saline is any better than a plain water IV for hypovolemia... happy you're feeling better finally! How did you get the IV? Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted January 24, 2012 Report Share Posted January 24, 2012 It never did anything for me. I even had a bag of saline plus a meyer's cocktail with a glutathione push for 5 weeks in a row that never helped my dysautonomia. I have oh and pots and my bp still drops upon standing and my heart races after being up for 10 minutes. Salt loading hasn't helped that either. It would be interesting to see who it helps, what symptoms it eliminates and then maybe we can figre out why ... btw. I've been healthy at rest, supine, since oct 2007. I'm ony symptomatic upright. Or if I've eaten the wrong food, am hungry or had caffeine. Quote Link to comment Share on other sites More sharing options...
RunningWild Posted January 24, 2012 Report Share Posted January 24, 2012 When I was hospitalized and getting constant saline, I found I was still blacking out and getting dizzy upon standing (which I had to do often since I had to pee like every 10 minutes)... But my nurse was also always running in and asking if I was okay because they could see my heartrate spike like crazy on the machines.... Idk that it really helped me much, but would like to see if would help during a really bad day (like yesterday omg)...Good thing my ER copay is down with my new insurance! lol Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 24, 2012 Report Share Posted January 24, 2012 It's always been a "miracle treatment" for me. Just short-lived. Quote Link to comment Share on other sites More sharing options...
yogini Posted January 24, 2012 Report Share Posted January 24, 2012 Our bodies don't push water into the bloodstream in the same way that saline does. That's why it is so effective. It works regardless of whether we are hypovolemic, as an instant boost to BP. Too bad it doesn't last longer!I have had saline exactly once - right after my TTT - and I went from feeling like death to perfectly fine. I have tried to get saline during other flares, but never found a doc willing or able to give it to me. Usually in the US, you have t o go to the hospital for treatments, which makes it expensive.I think ports are reserved for severe cases/PAF, due to the risk of sepsis/infection - which has happened to several people on the forum. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 24, 2012 Report Share Posted January 24, 2012 I asked one of my specialists this question about why IV seems to hydrate better than oral and why no matter how much we seem to drink we are always dehydrated.....he said it might be more of a cellular dehydration issue that cant be easily fixed just by drinking. He is also trying to figure out why I never have the urge to drink.....like my brain just isnt sending the message that its getting dehydrated. Before starting florinef I would be admitted to hospital and fed 6 bags of saline before having any output and yet my kidney function is fine apparently....weird....Bren Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 25, 2012 Author Report Share Posted January 25, 2012 Rama-must be that we aren't absorbing it orally as well, it's being flushed too quick by our overactive bladders... and I don't know if the saline is any better than a plain water IV for hypovolemia... happy you're feeling better finally! How did you get the IV?Exactly! As I was telling a few people I can drink all day and eat salt all day but the response is minor - 1 litre of saline and im ready to start gymnastics! LOL. All my symptoms COMPLETELY went away except tachycardia and maybe a little breathlessness. No dizziness, no orthostatic weakness. I went for a walk and came home and all I felt was mild dizziness that resolved within one minute of being home. I nearly cried the results were so dramatic (and I usually like to consider myself reasonable stoic - or atleast portray myself that way).So in my case at least there seems to be a mismatch between how much sodium and water is staying my system from my stomach versus how much should be staying in there im guessing. There is some research on the clinical trials website talking about these issues in POTS right now so im quite excited. But I NEVER crave salt - as in ever. I crave liquid all day every day though - worse if im standing or sitting.My blood pressure did not change after the infusion. My heart rate was the only measurable change and the fact that my veins appeared again. the doc describd my veins as like an old persons or like someone who had just come back from the desert - as it totally dehydrated. So I am now very interested in the hypovolumia angle in my case or perhaps if there is increased capillory leakage in POTS then maybe it helped that? Just guessing really.My advice anyway is that if your tending to be a hyper patient like me it is worth trying saline to see how it goes. I think I read that most but not all patients receive a dramatic improvement. I wasnt expecting as much as I got to be honest.if you have trouble getting it you can always do what I did once. Go to the ER and tell them that you have bad gastro and have been unable to keep fluids down LOL. Sounds dodgy but if you want to be taken seriously it works.Now I need to work out a way to get the stuff in easier LOL...And BTW - 20 hours later and I can still feel the effects. During the infusion i started to get paranoid it was making me worse and it took about 20 minutes before I felt better. 1 1 1/2 hours later was when it really kicked in for me. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 25, 2012 Report Share Posted January 25, 2012 I have literally probably had 20 IVs easily... everytime I go in to an ER or whatever they give me one regardless. I dont know if its just the hospitals I go to, but the always just hook up one for me no matter what I go in for...I never felt worried about it because its just saline... not too much harm can come from them During labor they gave me 3 bags before they put my epidural in and I felt a ton better. Wish they were easier to get. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 25, 2012 Author Report Share Posted January 25, 2012 I think its magic stuff! Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted January 25, 2012 Report Share Posted January 25, 2012 Any of your docs suggest the saline with albumin? Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted January 25, 2012 Report Share Posted January 25, 2012 Just out of curiosity, have you tried letting table salt slowly dissolve in your mouth. I've noticed a few times, but not always, that eating table salt, 500 to 1000 mg at one time can give me an energy boost. It normally takes me about ten minutes to eat it all. And a word of caution.. The first time I tried this, I got a headache from going too fast. I carry packets of salt for this purpose. Table salt seems to be more effective than sea salt. Could be the iodine or chloride in table salt. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 25, 2012 Report Share Posted January 25, 2012 I have tried dramatically increasing salt/fluids, drinking pedialyte, gaterade, ect and nothing has really compared to saline IVs. I just dont think our bodies can put that much into your blood stream by having fluids go through your stomach. Also I notice that I am still thirsty even after 2 bags of fluids... Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 26, 2012 Author Report Share Posted January 26, 2012 Im the same - no amount of injestion of salt through food or drinks comes close to the experience I got from saline. I am now convinced we have some sort of malabsorbtion going on or a set point for our blood volume that is way too low. increased salt in my food does nothing unless im on florinef or licorice. gatorade can help for about 20 minutes tops.No with the albumin - just plain old saline this end.its worn off now and I miss it! And in terms of exercise If you could to maybe a two week period of intense exercise with daily saline infusions you could dramatically improve your fitness because on saline I had no rebound symptoms at all from exercise whereas at the moment I have terrible rebound and hace had to stop running for the moment. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted January 26, 2012 Report Share Posted January 26, 2012 Could damaged solute transporters as seen in celiac disease explain this ?Interesting idea on us having a set point for low blood volume .. most times when I've gotten a saline iv,my bladder filled quickly and i had to run to the ladies room. Did anyone else notice that ? Of coursesince I'm laying down my kidneys work better too tho. Btw, I was thinking that letting salt dissolve in the mouth is the equivalent of using a sublingual. I'm assuming that's whyit works for me whereas eating or drinking salt doesn't. I've never had a headache from eating too much salt,but I get one from this if I go too fast. I don't know if the pressure I feel is from increased blood volume or constricted blood vessells. btw. This is great news .. I hope it leads to further improvements for you. Tc .. D Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 26, 2012 Author Report Share Posted January 26, 2012 Oh I get ya - sublingual. Worth a try... thanks for the idea! Quote Link to comment Share on other sites More sharing options...
McBlonde Posted January 26, 2012 Report Share Posted January 26, 2012 So glad you posted this topic. I had a mammogram and passed out while standing there (LOL) was taken to the ER where they hooked me to up an IV and I felt like my old self within an hour. It must be what a drug addict feels like when they get there fix! I would give anything to have it again.Does anybody know the medical protocol when admitted for IV infusion for POTS? I would love to know. I'd be willing to get a port.... Maybe Home Health could do the infusion? I've tried everything and yet I'm worse. I'm at the end of my rope on knowing what to do! Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 26, 2012 Report Share Posted January 26, 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 also was carrying twins which increases your volume even more. How on earth was I hypovolemic? Some might argue that I was pooling. There is no way that amount of blood was pooling in my splanchic bed. I often hypothesize that us hyper pots are not truly hypovolemic. I wonder if something is wrong with our sensor and our body just "thinks" we are hypovolemic and is sending the RAS system into overdrive. Maybe the saline helps because it is temporarily overriding the faulty sensor. Just a thought. So much of this doesn't make sense Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 26, 2012 Report Share Posted January 26, 2012 I was also worse than ever when pregnant and that third trimester was just plain awful. Hypovolemia doesn't fit me either. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 27, 2012 Author Report Share Posted January 27, 2012 After the infusion i noticed I was still trembling in my hands and feet, still had high tachycardia and had breathlessness for the first time. I dont automatically believe that hypovolumia is my sole problem but it must contribute.An alternative hypothesis is that there is an autoimmune process that increases the permiability of blood vessels in the splanchnic circulation leading to orthostatic vascular hypovolumia.Net deficiency might result in excessive sympathetic outflow from increased NE and hypovolumia through other effects.Short answer is I dont really know how to explain it. My relapses come on out of the blue but perhaps this just means that my body is able to compensate ok up to a point and then crashes.I do know that saline helped me amazingly and I would encourage any patient with POTS who is struggling to get an infusion for relief. Quote Link to comment Share on other sites More sharing options...
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