1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

Saline for PoTS & CFS

Posted , 5 users are following.

alice63994
alice63994

Has anyone on here received IV saline for their PoTS or CFS and if so have there been benefits? And also how did you manage to get it in on the NHS (if you did) ? 

0 likes, 10 replies

10 Replies

  • Anonymous111
    Anonymous111 alice63994

    Posted

    Are you expecting this to do anything? Saline is literally just water with salt in it.
    • alice63994
      alice63994 Anonymous111

      Posted

      Alot of people with PoTS have low blood volume and i think cfs patients do too, and the saline increases blood volume. There is also other unknown reasons as to why saline helps CFS and pots but there is hundreds of report and studies that show it has/can completely change the quality of life for people with these conditions 
    • alice63994
      alice63994 Anonymous111

      Posted

      I'm not really too sure, I have heard of it but I know that it is used very frequently in the US. I have emailed my doctor to see if he knows if its available, and also sent him a few articles too! Never seen the one you posted - thats a good one too!

    • robin52198
      robin52198 Anonymous111

      Posted

      I have this problem too. Autonomic dysfunctions. It effects my breathing,standing, low BP, unstable electrolytes where my sodium level is so low I have had to go to ER for IV liter of sodium. Then had to return the next day for another liter. I use a lot of salt and drink plenty of water but doesn’t matter. Any suggestions?
  • tracy47348
    tracy47348 alice63994

    Posted

    Wow, I've never heard of this. I will have to look into this. I have cfs with pots and my cardiologist is having me take low dose midodrine which helps a little but it elevated my blood pressure once and really gave me heart pain. So he said to take propanalol at night. I will only when my bp gets high because last time i tried betablockers i ended up in ER with bad heart pain. They couldnt find anything so im assuming its just from POTS and all the other weird heart issues with CFS. I had a echo.done which was normal. I had asked my GP for sodium chloride tablets before but they didnt work. Im just guessing the EBV virus is wearing out my heart. I would love to have a prognosis some day . Or a new heart.

    • alice63994
      alice63994 tracy47348

      Posted

      That's really strange that nothing has come up in your echo! It must just be the pills, as both of them can have horrid side effects (especially propranolol). I've had that as a PRN for anxiety and my cardiologist said that he'd much rather have me on ivibradrine for my PoTS as it doesn't mess with blood pressure (my blood pressure isn't toooo much of a problem compared with my HR). You should defo speak to your GP or cardiologist about IV saline, I think it's a long shot especially as they'll NEVER put a PICC or port in a CFS or PoTS patient due to the risks, but if there's a way you can access an infusion centre, and if your doctor is dedicated and really motivated to help you I'm sure there's a way you could wangle it. If you'd like I'll post some good articles on the use of saline in PoTS & CFS. 

  • tracy47348
    tracy47348 alice63994

    Posted

    Thanks alice. I can probably Google it but sure if youd like to post some. I doubt insurance covers it but hey its good to know.
  • robin52198
    robin52198 alice63994

    Posted

    yes. Became really sick, very weak. Went to ER where they discovered very low sodium so they gave me a IV liter of sodium. Felt a little better so went home only to have to return next day for another liter

     

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.