HopeSprings Posted April 23, 2012 Report Share Posted April 23, 2012 I'm going to the Dr. in a few hours to get a prescription for this. She's not my regular Dr. so I'm going to have to explain the whole thing. Is there anything specific the prescription should say? The handout the CFS Dr. gave me says 1L of 0.9% saline -is that right? Thanks. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted April 23, 2012 Report Share Posted April 23, 2012 Hi NaomiI get 1 litre of saline over 1 to 3hrs every 2 weeks right now.....my dr is monitoring and will alter based on how I respond....hope that helps! oh and the home care nurse comes to my home and does it.....not sure if you have homecare but if you do you should get that written on the script also.Good luck!Bren Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 23, 2012 Author Report Share Posted April 23, 2012 Thanks Bren! What symptoms is it helping and for how long? Is it like an immediate thing where you know it's either going to work or not?I figure I'll try it once at the hospital infusion center and if it works, then make a long term plan. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted April 23, 2012 Report Share Posted April 23, 2012 My son did 5 days of 1 liter a day a month ago. He didn't notice much improvement until the third day and then he became much more functional at an earlier hour. He was in bed 20 hours a day and it broke that cycle. It was short lived though and the effects only last about 3 or 4 days after completing the 5 days. His was done at home. A nurse came to our house, put the line in and showed me how to disconnect a bag and start a new one. They came back on day 3 to check the line. I would have continued the IV Saline infusions, but he has since been diagnosed with MCAS and I need to know if those treatments are helping first before we resume the IV Saline infusions.Christy Quote Link to comment Share on other sites More sharing options...
brethor9 Posted April 23, 2012 Report Share Posted April 23, 2012 yeah it is short lived....basically once you pee it all out it wears off so I am not sure in the long run how much it will pay off....but atleast it gives me a couple days where I am not gagging to death from trying to force feed myself fluids...blah.....I am never thirsty! my dr hopes over time it will help retrain my body to want to drink normally...who knows? and apparently it does hydrate you differently because it is at a cellular level.....every nurse who comes in to do it keeps asking me when my last chemo was??? getting tired of explaining POTS they just look at me like I am crazy and cant understand why they have to hydrate me ;( be prepared for a bit of attitude Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 23, 2012 Author Report Share Posted April 23, 2012 My son did 5 days of 1 liter a day a month ago. He didn't notice much improvement until the third dayChristyHmm, that's not good then. If it possibly takes 3 consecutive days to help, I'm not sure what once a week or every two weeks would do. I may not know if it would be beneficial or not.Bren - does it do anything for your BP, heartrate or dizziness (forget if you have dizziness)? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted April 23, 2012 Report Share Posted April 23, 2012 When my son first started it, I posted a question about how long it took to see results. Most people posted it helped immediately, so don't give up hope on it yet. And yes Bren, the same happened with us...the nurse did not understand why he needed hydration even after explaining POTS to her. When she came back on the third day she mentioned her superiors did not know why my son needed hydration. So Naomi, be prepared for the drill of 'Why do you need hydration?" Quote Link to comment Share on other sites More sharing options...
brethor9 Posted April 23, 2012 Report Share Posted April 23, 2012 yeah dizziness has always been my most crippling symptom.....yes it does help with the BP and dizziness for awhile....the reason why my dr started me so low is because they have to watch your heart.....too much fluid too fast can affect your heart so they have to go slow and he said I still have to orally hydrate and stay on the florinef. I am really bad for fluids....on my worst days I may only urinate 3-4 times for the day....not good...therefore the infusions...it is worth a try Naomi its just saline it really cant hurt you and there are really no bad side effects except peeing more often lol!!! Quote Link to comment Share on other sites More sharing options...
brethor9 Posted April 23, 2012 Report Share Posted April 23, 2012 Christy...I finally just started telling them I have a nervous system illness that effects my kidneys and I cant retain fluids normally Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 23, 2012 Author Report Share Posted April 23, 2012 Thanks to both of you - very helpful! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 23, 2012 Author Report Share Posted April 23, 2012 So I didn't realize it, but the CFS lady actually specified in a letter to my Dr. what the dose and all should be. I had the letter all along and didn't even realize this - duh. She wrote it should be: 250cc over 1 hour the first week and then 500cc over 1/2 hour the following week. I like that she's being conservative, but is it enough? Quote Link to comment Share on other sites More sharing options...
brethor9 Posted April 23, 2012 Report Share Posted April 23, 2012 If I am not mistaken there are 1000 cc's in a litre of saline which would mean you are getting 1/4 bag the first week then half a bag the second week.....I receive a full litre every 2 weeks which would work out to 500 cc's a week (half a bag)......I assume you use the same size bags as in Canada....not sure if that helps? hope you get some relief with it!Bren Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 23, 2012 Author Report Share Posted April 23, 2012 I think so Bren because the Dr. I saw today said it works out to 1/4 liter the first week and 1/2 liter the second week. I have no idea where she got those numbers from, but I guess I'll just have to trust her. So hard for me to do. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted April 23, 2012 Report Share Posted April 23, 2012 That doesn't seem like very much. My son was taking 1 liter per day. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 23, 2012 Author Report Share Posted April 23, 2012 That doesn't seem like very much. My son was taking 1 liter per day.I know. Oh why is it never easy? I'm going to get in touch with her- if I'm going to try it, I want to do it the right way. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted April 23, 2012 Report Share Posted April 23, 2012 I also received 1L over 1 hour. Dr Raj recommends 1L over 1-3 hours in his article that I printed out. Seems like 1/2 or 1/4 bag wouldn't be very much. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 23, 2012 Author Report Share Posted April 23, 2012 Dr Raj recommends 1L over 1-3 hours in his article that I printed out. Which article is this? Maybe I can show her. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted April 24, 2012 Report Share Posted April 24, 2012 Naomi,Here is the link for that article. It is long, but you could skip to the part about non-pharmalogical treatments.http://www.ipej.org/0602/raj.htm He lists it as being helpful for blood volume expansion and acute heart rate control. I definitely did find the saline helpful, but I have not had it on a regular basis.I hope that it helps you.. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 24, 2012 Author Report Share Posted April 24, 2012 Thanks so much for the info. I actually e-mailed her and she wrote back. Can you imagine that?? A Dr. who allows you to e-mail questions? Love that. Anyway, she said she starts slow and works up to a liter because many of us are sensitive. I actually like that she knows that - and I'm ok with that plan. Sorry for taking up so much air time on this topic! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 24, 2012 Report Share Posted April 24, 2012 My doc gave me 1 or 2 litres in an ahour and a half and it made a MASSIVE difference to where I was at - from bearly conscious to feeling like going for a run. No adverse effects from 1 litre. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted April 24, 2012 Report Share Posted April 24, 2012 Naomi, That's great - both the fact that she is responsive to you and that she has a plan!! You'll have to let us know how it works for you and if you do notice any improvement from the lesser amounts. My PCP/family doc gave me his e-mail address a few months ago and the one time I e-mailed, he responded within a few hours. My internist handles all of my POTS related issues, but I still love the fact that I can contact my family doc if I need to. In a perfect world I think we should all have that kind of support, specifically when our bodies suddenly start behaving in a scary, erratic way. Quote Link to comment Share on other sites More sharing options...
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