Saline Therapy for Dysautonomia; Weeks 3 & 4

saline therapy for dysautonomia weeks 3 & 4 by @sarahfrisonhc

Here’s an update over the next few weeks of saline therapy, want to read part 1 & part 3?

Week 3

My doctor gave an IV needle a go this time, seriously, so much better! No real pain and so much easier to move around the house. Loving the saline, right now.

Did you know you can select any sentence in this post & share it? Give it a go.

vein, found

Week 4 a.k.a ‘butterfly needles suck big time’

Last week the iv needle was so much better, and so was I! Unfortunately the pharmacy needs to order those in, so my doctor decided to give the butterfly needle another go. Yeah, bad idea. After several attempts where each time the needle popped out of my vein (running saline straight in my arm, ouch!) he concluded my vasoconstriction was just too bad to try again. We’ll give it another go when the iv needles are in. I’m seriously relieved I don’t have to handle 6 hours of ‘there’s a needle scratching the inside of my vein’ again. I could’ve done with the extra fluids, though.

2 days later

The IV needles are here, woohoo! It’s a good thing they come in boxes of 75, a whole lot of poking and 3 needles later we still hadn’t found a vein, at this rate I’ll have lost more blood than the saline would replace :).

carnage
Carnage!

We’re done for the week, another attempt and a minor meltdown later, I’m wiped. I wanted to do loads, but I made the decision to just stop, take a break, take my exam and slow down. I took my exam (aced it!), made some dinner, put my butt on the couch with a hot water bottle. I’ll probably dust off my dry shampoo instead of going through the whole hair washing routine. Sometimes we’ve just got to accept defeat.

For now, I’d love to hear from you! Do you have constricted veins? Do you have any tips for getting the IV needle in? Let me know in the comments below.

Sarah

5 Replies to “Saline Therapy for Dysautonomia; Weeks 3 & 4”

  1. Hi Sarah

    How did you and your doctor decide if this would be a good therapy for you? Did you take information with you to the appointment? Or was it more a case of suck it and see?

    1. Hi (it’s Jenny, right?)!
      I just asked my doctor and he figured it was worth trying. This whole thing was right after I did the tilt table test and I was at my worst in 4 years (those tests really are horrible but necessary) so I guess he didn’t mind giving it a go and see what happened.
      To get the port catheter, it was important for him to see and know that it really helps me so I shared every single thing with him, I’ve been able to do because of the IVs.
      I also mentioned that doctor (Santa Maria?) in Florida and the articles he wrote about saline for POTS but in the end the amount my symptoms improved was the thing that convinced him. Are you trying to get saline infusions, too?
      I hope you’re well,
      Sarah

  2. I’ve been getting hydration infusions since Nov. 2013. It started out 2 Liters, 3x/week at the Infusion Center at University of Toledo Medical Center where my cardiologist has his clinic. Then, because I have a port, he decided it would be better 2-3 Liters twice a week. He did not want my port being accessed so frequently (risk of infection). My condition was not improving so I am now homebound and have a Liter of fluids run daily. My Home Care Nurse comes once a week to change my port. A port was decided due to the fact that I have little or no venous access because I’m so dehydrated all of the time and I had two kidney auto-transplants so my veins are shot. I had a right sided heart cath last December which revealed even more bad news as far as my vascular system or the lack thereof. My doctor is trying to make a connection with my kidney autotransplants, my poor hearth cath & the fact that my blood does not circulate fast enough leaving me to faint frequently. Even with the daily hydration, I continue to struggle. I’m also on a new medication that was just approved to be used here in the United States (has been used for years in other countries). We are hoping this medication will better control my heart rate because not only do I have NCS & POTS but also tachybradysyndrome. Even with my pacemaker, my heart rate is tachy. Good luck to you!

    1. Thank you for sharing this part of your story, Kim!
      Sorry it took me a while to reply.
      I try to reply to comments a lot sooner, but I had my port surgery the end of August so I’ve had to take a break from my site to recover and I’m now catching up on everything.
      My doctor finally agreed to have the port surgery because there wasn’t a single vein they could use anywhere on my body left, unfortunately.
      I hope the new medication has started to work for you in between your comment and my reply and you’re feeling a bit better.
      Sarah

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