Akgirl Posted April 2, 2013 Report Share Posted April 2, 2013 I am considering asking my nuero to try iv infusion on the week of my period. I get so much worse when I am menstruating, and I have read some pretty positive things about saline. Please let me no your personal experiences. How often, how soon do you feel results ect. Quote Link to comment Share on other sites More sharing options...
azmusiclover Posted April 3, 2013 Report Share Posted April 3, 2013 When I have gotten IV saline in the past, I feel better as soon as the first bag is in. A second bag is even better but once I get past 3 bags I start feeling waterlogged. It lasts about 36-48 hours for me. I asked my neuro about scheduling IV's for me when I have busy weeks with the kids or every few weeks and he was not a fan. He said that he didn't want me to get dependent on doing it, it's really hard on the veins etc. I wish I could have it done. I wish you luck with getting your neuro on board. Quote Link to comment Share on other sites More sharing options...
weathermandj Posted April 3, 2013 Report Share Posted April 3, 2013 Saline IV's have helped my POTS flares while in the hospital ER. Who could I talk to about IV treatment's? I don't have a neuro I see. I have seen someone say they had it done and a home health care nurse came to their house 3 times a week. My aunt is a home health nurse who could do it. I'd just need a script I guess? This treatment helps me. Quote Link to comment Share on other sites More sharing options...
SnowDrifter Posted April 3, 2013 Report Share Posted April 3, 2013 IVs don't seem to help much for me. They make me pee a lot and I taste it, that's about it Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 3, 2013 Report Share Posted April 3, 2013 I just had 2 weeks of IV saline treatments, 3 x a week. I thought it was GREAT! Helped a lot for about 24-36 hours. My cardio wrote the script for me locally, based on an immunologist's recommendation from out of state. Unfortunately, the local cardiologist wrote for D5 saline which has dextrose (sugar) in it which triggered reactive hypoglycemic episodes, which cause their own set of autonomic reactions in me. But, they were still helpful enough that I've asked my cardio for an extension of the treatment- with a change to normal saline. Waiting to hear if he'll do it or not. It's not a good long term solution I know, but I've been in a major relapse for several months and the immunologist suggested it might be helpful to get out of it. So, am trying that philosophy with my local doc. I see the same neuro as azmusiclover though, so now I know not to ask HIM for a prescription for the IVs. Quote Link to comment Share on other sites More sharing options...
azmusiclover Posted April 3, 2013 Report Share Posted April 3, 2013 Right, Chaos? All my doctors are through Mayo so I don't think that's ever gonna fly for me . My GP refers anything that's POTS related back to the Neuro. I am going to ask again when I see him in May, specifically for the days that I have lots of therapies or doctor's appointments for the kiddos. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 3, 2013 Report Share Posted April 3, 2013 They help most - usually help me although one time it didnt. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted April 3, 2013 Author Report Share Posted April 3, 2013 What excactly did they help with? Was it just the tachy or was it the sick and dizzy and nasea too? The reason I am asking because I am having a hard time doing any exersize at all during the week of my period. So my thought was that perhaps this would alleviate my day to day symptoms, not just the tachy. Quote Link to comment Share on other sites More sharing options...
weathermandj Posted April 4, 2013 Report Share Posted April 4, 2013 Thanks for the info. Quote Link to comment Share on other sites More sharing options...
azmusiclover Posted April 4, 2013 Report Share Posted April 4, 2013 For me, I "perk up" when I have IV fluids. My color is better, I feel more alert. I also have more energy and am able to do more things without feeling so wiped out. My blood pressure stabilizes and I just feel better overall. I feel more "normal." I hope that helps. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted April 4, 2013 Author Report Share Posted April 4, 2013 Totally does thanks everyone!! Quote Link to comment Share on other sites More sharing options...
ACsMom Posted April 4, 2013 Report Share Posted April 4, 2013 DD tried this last fall via IV on her arm/hand which a home health nurse set up. It really helped so she now has a port and accesses it herself 3x/wk. It has helped a lot. Better endurance and energy so she can now do her exercises and has even joined a small local gym to use the treadmill and some other machines but all within limits for her joints. She has had a couple of episodes after starting the gym where she was very tired later that day. EDS or POTS, I don't know but she is working on adjusting her routine and intensity so that fatigue doesn't hit her. It has helped with concentration and focus so that has helped with schoolwork. She doesn't get POTSy driving. She's up and active, probably went from 50% function to about 80%+ function. The one question is how will she handle the heat that will be coming shortly? Don't know but so far, it's been a life changer. She sees a nephrologist. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 5, 2013 Report Share Posted April 5, 2013 For me IV saline made me go from lying there barely able to lift my head or arms off the bed to standing up, ready to rip my shirt off and run a marathon. And Im not exaggerating. the result was amazing the first few times I got one.It increased my tachy mildly, and made me feel slightly breathless, but it also gave a calm feeling of energy, strength in my arms and legs, clarity of vision and strength and a feeling of relaxed wellness.i still had trouble remembering certain works for some reason.the results were bizarre. Since Ive been on florinef I find it less helpful and I have theories about that but i wont bother you with them. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 5, 2013 Report Share Posted April 5, 2013 Im a somewhat lucky POTSie - i get large variations in my symptoms - sometimes very bad sometimes nearly non existent for months on end, Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 5, 2013 Report Share Posted April 5, 2013 I keep trying to figure out why these IV saline treatments help as much as they do, but like others have said, I feel like I have energy, like I can think more clearly, like I can be upright and do things more like I used to. I do get slight palpitations and slight breathlessness initially when I get them, but nothing like the symptoms I have when I don't have them. I still am not "normal" but so much closer to it than with anything else I've felt in the past 3.5 years of being sick that I'd be wiling to consider getting a port at this point- especially if I could lose some of the meds I'm on. I've been having more and more issues with "tipping over"/losing my balance the past several months. When I was getting the saline regularly for 2 weeks, that pretty much went away. I just attributed it to a normal fluctuation in my "disease" state and ignored it, but once I went 2-3 days without an IV, it started up again. I'm scheduled to start the IVs again next week so I'll be curious to see if there is an improvement in that symptom again as well. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 5, 2013 Report Share Posted April 5, 2013 Some suggest it isnt the volume as such but the sudden increase in it and sodium which augments the sympathetic nervous system for a short period. No idea if this is correct. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted April 5, 2013 Report Share Posted April 5, 2013 My first TTT was done while being hooked up to Saline IV for about 30 mins or so. It made no difference in my symptoms, heart rate or anything. I know I'm a weird one here with this, but that is my experience with saline.If it gives that much relief, then consider me jealous!! Quote Link to comment Share on other sites More sharing options...
ACsMom Posted April 5, 2013 Report Share Posted April 5, 2013 DD's infusions are done slowly, usually about 3 1/2 hours to 4 hours for 1500ml. A fast IV such as they give in the ER..... don't know if that would help as much. Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 5, 2013 Report Share Posted April 5, 2013 Yes, I wish I could get them to do mine slower but the slowest I could get them to agree to was 1 liter over 2 hours. I've heard that amount over 3 hours is preferable and having it warmed to body temp is better to avoid reactions that can occur from getting them too quickly at room temp. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.