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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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  • 2 weeks later...

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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  • 2 weeks later...

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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  • 1 month later...

Sorry for the delay. I haven't been on-line since I posted. I'm not sure the articles would still be relevant since they would be over 8 years old at this point. I was diagnosed in 2011.  There was less known then, and doctors weren't arguing as much about the efficacy of IV saline. Now they are worried about the risk of infection and clots, etc.

Since IV saline it has been so effective for me and kept me relatively stable for years, there's little incentive to mess with a successful regimen. Also, I was an OR nurse for many years, so it was easier to convince them I knew how to maintain sterile technique. During my very infrequent travels, the home health agency writes a letter so I can take the IV bags and syringes with me and administer them at my destination as needed. 

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I started Iv fluids in February and it has made a dramatic difference. I do not have a port and access through my hand veins. I'm usually much better for about 48 hours after 1L over 2 hours. Sometimes I also get irritable, jittery after an infusion but not always. If I do, it lasts several hours. We slowed the infusion down from 1.5 hours to 2  hours to try and help with that.

The plan is to move to home infusions, 3/week. But it is very difficult to get this set up through two different VNAs (one wouldn't do it because I don't have a port).

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@jvherenow - I am so happy that you are finding IV fluids helpful and are approved to get them regularly scheduled!!!! One thing I - and many others - have found helpful with ANY problems from the infusions ( such as irritability in your case ) is to slow the infusions down even more. I went from 2 hours to 4 hours and now 1 l over 8 hours for maximum results, they seem to last longer with the slower infusion. 

Most home care agencies require a long term access for home infusions - that is why I have a port. If you live in a city you may be able to get them at an infusion center but you would have to be there for the entire time. I was told by the surgeon that put my port in that any infusions that need to be given weekly justify a port insertion since frequent peripheral IV's pose a risk to your blood vessels. 

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  • 2 weeks later...

I am also on IV saline infusions 3x a week, for the next 3 months. I just finished my third today and went grocery shopping standing-up without and electric cart for the fist time in years! I have refractory, hyperadrenergic POTS (since 2010) and I am 67.  The infusions make my legs feel almost entirely normal! And, the fasciculations and cramping is 99% gone.  I still have some dizziness and blurred vision at time when I was out walking but, no serious fatigue or need to sit down. I didn't know what to do with myself!  I am not sure many docs schedule these regular infusions or not. Mine is at the new Autonomic Clinic at Hopkins. I would love to keep in touch with all of you who use regular infusions. 

 

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@Maux52 - nice to meet you! I am so glad that the infusions help you as well. I also have refractory hyperadrenergic POTS ( I am the original poster ). I know the feeling when you can go shopping right afterwards - feels like you are a super hero!!! Do you get Saline or ringer solution? I have found over the years that LR helps longer and controls my BP much better. I also do not retain fluid with it as I do with Saline. 

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I have a script for infusion 3x weekly too. I do 1500-2000mL of saline. Nothing helps as much as an infusion... but the effect is gone within two days. The only things that restrain my use are acting to keep my veins usable, and time to run the fluids slowly" good luck! So, I wouldn't say that I get permanent results, but it's vital to me.

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I would like to update: I just "survived" a double middle-ear-infection with ear drum rupture, 3 days of fevers, extreme pain, unable to eat or drink sufficiently. Now on Antibiotics and improving. This kind of severe illness in the past would have caused me to crash at the first symptom of infection - seizures, syncope, inability to walk at all etc. Well - thanks to my weekly fluids I took it like a "normal" person - no flare or crash WHATSOEVER!!!! My regular scheduled infusions are on Thursday so my PCP ordered another 2 liters to be given yesterday ( Tuesday ) just to make sure, but I have no HR or BP problems, no OI other than my normal. In my history of POTS this is a miracle - never have I ever not crashed from an illness, not even the sniffles!!! 

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This is wonderful news! I just had my 1st infusion at home Friday. I will have them 3x week. What I am reading is very encouraging! Glad to hear it is helping so many of you. ūüėĀ I am weaning off an antidepressant right now so I can go on Northera so I am not quite myself overall. Good to hear the positives!

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