joiedevivre Posted November 7, 2018 Report Share Posted November 7, 2018 My gp is so nice and wonderful and agreed to let me try IV saline the first time I asked! I've not seen him to get the script yet. Do you have any advice? I don't know much about IV saline for pots and neither does he. I think I've read someone say that that tried one liter and got no help, but after trying 1.5 they did? Should I ask for 1.5? I also heard the time span matters? How much time per liter? Also, is all the research on this by dr grubb? What time/amount do they use in research? Thanks! Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 7, 2018 Report Share Posted November 7, 2018 @joiedevivre - congratulations on having a good GP! Mine has been wonderful - without him I do not know where I would be now! He also went out on a limb for mw by ordering IV fluids years ago - and I have continuously proven by way of hospital records that my symptoms and vital signs improve with IV fluids!!! - My autonomic specialist has given me a prescription twice for 1 liter of NSS over 2-3 hours weekly for 1 month. This has always been helpful but has shown not to be enough in an acute flare (for me), but many other patients have benefitted from this protocol. It might be a good idea to start with that and then see how you react to it, as well as monitoring how you do without those fluids afterwards. That is a good way of determining your body's response - but you have to monitor everything, from your symptoms to your vital signs in order to show actual results ( rather than saying you feel so much better ). -- I am so happy your doctor agreed to try this - you have good taste in docs!!! Good luck - I get IV fluids weekly at home through an infusion port and have seen miraculous results. You are welcome to PM me if you have any questions regarding this treatment. Good luck!!!! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted November 8, 2018 Report Share Posted November 8, 2018 That's great! I wouldn't start with more than a liter-not everyone can handle it, plus it'll take you a long time to infuse if you go nice and slow, which so,e of us have fund beneficial. I had the same experience where the doctors who were knowledgeable in this area didn't want to order the fluids, but my hematologist was brave enough. Now that's it's obviously a huge help, one of the cardiologists said he'd take over prescribing. My original order was for a liter 3 times a week, but with my clotting, that's brutal on the veins. I do 1.5 liters when I need it-it could be every other week or every day. I charted hourly BPs. Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 8, 2018 Report Share Posted November 8, 2018 I second what @RecipeForDisaster recommends - slower infusions show better results. I run mine over 6-8 hours and this is way better than the faster infusions. Also - I have found LR to be more effective than NSS. I seem to retain some of the fluid from Saline but not from LR. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted November 8, 2018 Report Share Posted November 8, 2018 Sometimes I really need the fluids but I don't have 6 hours to run it.... it's not worth it to run it quicker, for my body. It's hard with no pump and just an IV pole.... you're fairly limited. Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 8, 2018 Report Share Posted November 8, 2018 @RecipeForDisaster - my IV supplies come with tubing that has a rate-regulator built in - a wheel you can adjust to whatever rate you want to run your fluids (it's not a pump). Since I receive my fluids at home I ususally run it at 150 ml/hr, but if I need to run it faster I could adjust it to even 250 ml/hr. Yes - anything faster than over 6 hours is a waste of effort. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted November 9, 2018 Report Share Posted November 9, 2018 I have the rate-flow tubing, too. With a pump I wouldn't need an IV pole and could more easily go places in the car, etc. It's hard enough going up and down stairs, and I sure don't do errands or anything! I could also run it overnight if I had a pump-I could make sure it didn't run quickly enough to run dry before I got up. Rate-flow is good but it's not extremely accurate. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 9, 2018 Report Share Posted November 9, 2018 When I was very sick w POTS this past year I started at 2 liters over 4 hours 3 days a week. I do think the slower the better in terms of benefit. (And for me, I didn't start to really turn around until I was hospitalized and got fluids over 48 hours.). This was tapered to 1 liter over 2 hours 2 days a week. Along with this, for me, lots of fluids and salt orally as well. I hope it helps you to feel better. I feel it was a huge benefit for me and allowed me to recover much faster from a severe relapse than I would have otherwise. Quote Link to comment Share on other sites More sharing options...
Andy T Posted November 12, 2018 Report Share Posted November 12, 2018 I have my fluids twice weekly, 1 litre over 4 hours. It has improved my symptoms so much I really cannot believe it. I find faster infusions just give me a really bad headache. Dizziness is almost gone, postural sweating, nausea and breathlessness have all but disappeared. BP is now normal (120/60 or thereabouts), where it was 75/45 previously or lower. Joining the gym next, which is an achievement considering I struggled with a flight of stairs 2 months ago. Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 12, 2018 Report Share Posted November 12, 2018 Great news, @Andy T! I also am experiencing only positive results from my IV fluids. The energy I have and the good numbers far outweigh the risks (I have a port). Wish more docs would listen to their patients and observe the actual benefits from this therapy!!!! Quote Link to comment Share on other sites More sharing options...
Andy T Posted November 15, 2018 Report Share Posted November 15, 2018 On 11/12/2018 at 9:13 PM, Pistol said: Great news, @Andy T! I also am experiencing only positive results from my IV fluids. The energy I have and the good numbers far outweigh the risks (I have a port). Wish more docs would listen to their patients and observe the actual benefits from this therapy!!!! Cheers, I too have a port (Hickman line). yes we do do have risks associated with a central line but without it, quality of life is much reduced. Quote Link to comment Share on other sites More sharing options...
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