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Personal Experience with Saline Infusions for POTS


I've been pretty sick.  From the very beginning of February until very recently, I was essentially bed bound.

My Postural Orthostatic Tachycardia Syndrome (POTS) symptoms were completely out of control.

So...

I started getting intravenous (IV) hydration a.k.a. saline infusions once a week.

 

My cardiologist, who specializes in POTS, prescribed them and faxed the prescription to my local primary care doc who also doubles as my migraine specialist.

My local doc rewrote the prescription so I could have the infusions locally, as my cardiologist is about three hours away.

That would not be a convenient weekly drive.

It wasn't horribly fun to get a liter of saline over 3 hours once a week, but I only did it four times.  


I went to two different infusion center locations, the first in the downtown hospital location, and the second at the newer more suburban hospital location.

The downtown location had nurses more skilled at starting the IV, but the newer location had private rooms and personal heaters.

Why are hospitals always so cold?

Anyhow, the saline infusions... HOLY COW!  They worked!

I'm not back to my most active self yet, but I am not using a wheelchair anymore either, so I consider that a win.

I haven't had any weakness or trembling in my legs since the saline infusions.


I have even been able to start physical therapy.  

I also have Ehlers-Danlos Syndrome (EDS) with hypermobility so physical therapy is important not only to combat deconditioning but also to protect my joints.

The saline infusions aren't a magic cure.

At least, I wasn't magically cured by these saline infusions, but they have gotten me back on my feet.
Now that I am able to be out of bed, I can do the work of reconditioning my body in a healthy and safe manner.
This should lessen my experience of symptoms from both POTS and EDS.

It's awful being sick in bed and feeling stuck there, knowing you have to get up to get better but you just can't do it.
And all the while, you know that lying in bed, or being stuck on the couch, or in that wheelchair, is only making your body weaker, sicker, more rundown.
 It's the worst.

I know what it's like when your chronic illness backs you into a corner.
And, I know what it's like when no when understands that all you want to do is to get up.
You fantasize about being able to do housework.
You daydream about being able to go back to work or school.

If you have POTS, IV hydration might be a tool for you in an acute situation. 

Finally... something to help pull us out of those downward spirals.

I can't guarantee that you can find a doctor that is open to to saline infusions, and I can't assure you that your insurance will cover them.
And, if you get past all that, I won't promise that saline infusions will work for you, because we are all so different.

I can tell you that IV hydration helped me a great deal after months of decline, and it has helped other POTS patients too.  

It is researched backed and very low risk.

 Read about it

Maybe you can find a bit of hope in all of this.
Sometimes things do get just a little bit better.

Sending you Healing Hugs and Hope,

 





Comments

  1. This is amazing to read! I'm so happy it said such a positive effect on you :)

    ReplyDelete
    Replies
    1. Thank you for your kind words! I am happy about it too :) I hope it helps some other people as well.

      Delete
  2. Anna I am so glad to read this! So much love.

    ReplyDelete

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