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Improvement of POTS from IV fluid therapy

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W-E-L-L …. today was the first day on the lesser dose and I am sorry to admit - I went down. BUT --- it is the first day, so it could be expected. I still have an awesome record, I still feel great. Who says that a little faint is a big deal? I am going to BEAT my OLD record now!!!! - I will update. All is well!!!!!

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I'm feeling similarly over-optimistic on my tiny dose of Adderall. I was asking my husband what I'd do with my extra IV fluids if I never needed them again.... I mean, I can take twice the dose of Adderall if I need to! I know that's a crazy thing to think about after 2 days on it... but maybe LDN will also help and I really won't need fluids anymore!

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Dear @RecipeForDisaster - DON'T throw out your fluids!!!! There will always be times when you need them, illness, stress, surgery etc,. But it is GREAT if you do not have to rely on them on a weekly basis!!! I am glad that you find improvement from the Adderall - Ritalin also helps me so much!!! --- The best thing about the IV fluids is that I can actually function - I do not have to drag myself around and force myself to do things. I actually have energy and some endurance as well!!! --- I bet yesterdays set-back was due to the fact that I felt so good that I decided to take a little walk. AND then cooked a casserole for church and had to stand at the stove. So - I guess it was poor judgement rather the lower dose of Diltiazem.!ūüėŹ

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I have been feeling better than I have without IV fluids in years... it's pretty amazing. I'm eager to DO things, and I took a lovely warm bath just to push my limits!! I just feel more like my old self which is so wonderful. Not like a garbage can of suffering!!

 

I sure won't get rid of my fluids, not until they are years past their expiration dates anyway. The copay is $30 per dose! I know I will definitely crash again, and maybe I won't even be able to get Adderall continuously between insurance restrictions and prescribing issues (I should be good as long as that one doctor is around!). Not having to stick to an IV pole for 7 hours a day is glorious, but I'm still grateful to have them on hand.

 

I didn't have high hopes for Adderall... I saw it as a last ditch, desperate kind of thing. I wasn't sure I was willing to try it, but am so glad I did. Soon I'll start LDN and maybe I won't even need Adderall anymore!

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Update: just survived the flu ( type A ) without a major flare … just my weekly fluids and rest. In the past this would have landed me in the hospital FOR SURE … and then I would have to spend weeks to recondition. Another win for long term fluid therapy for POTS!!!!!!

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I have a very minor respiratory infection and it's throwing me way off. BP 10 points lower, HR 20 points higher than they were, I'm back to blacking out when I get up. I'm probably heading towards IV fluids for a bit... even after Adderall which was really helping. I'm very glad to have the fluids on hand, but these setbacks are discouraging.

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I've been on IV saline for about 7 years. I currently have a tunneled central line that has been in place over two years. I run 1 or occasionally 2 liters of saline a day and this has kept me stable for these 7 yrs. without one episode of syncope. I do take droxidopa which successfully maintains my bp better and more evenly than midodrine did. Being a former OR nurse also helped me be able to do some of the research and talk the talk with my physician. If he hadn't been willing to be a partner in my care, he wouldn't have stayed my doc. We both had suggestions and ideas and had to listen to each other.

When we were discussing, I brought only one or two of the best, most current, well researched scientific articles I had found on Google Scholar. I highlighted who had done the studies, when,  results, and maybe two or three relevant sentences. We did a trial to see if IV saline would help before we made the decision to place a PIC line. 

 

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So glad you are seeing such an improvement! I am as well, been almost a year now doing a liter a day and boy does it make a difference! Because I also have severe gastroperesis my GI dr has me do extra fluid iv if needed for a total of at least 2 liters all combined. Its a blessing having drs that will work with me and my ever changing symptoms.

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So - 6 months of IV bliss! And recently I had to skip one of my IV's due to travel and did not get one for 2 weeks. After 10 days I was going downhill - tachycardia, high BP, chest pain returned big time, fatigue and exercise intolerance. Had to stop exercising and mostly stay in bed. When the nurse came on day 15 and hooked me up I soaked up that fluid as if my life depended on it! And - the next day I was much better, although I am now reconditioning myself. That is another fact that many docs do not take into consideration: we work hard to be able to do what we can physically and every flare lands us being inactive and needing to spend weeks to get back to where we were. I have to see my PCP soon to get the fluids reordered to my insurance company. I guess if they ever tell me to stop them I will go back to square one. But this recent experience showed me that in my case I will most likely need fluids for ever, unless someone finds the magic pill. 

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On 2/25/2019 at 2:16 AM, nomdeguerre said:

When we were discussing, I brought only one or two of the best, most current, well researched scientific articles I had found on Google Scholar. I highlighted who had done the studies, when,  results, and maybe two or three relevant sentences. We did a trial to see if IV saline would help before we made the decision to place a PIC line. 

Are you able to share a link to this info?

Many thanks.

B x

 

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