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Showing posts with the label POTS

Five Ways To Hydration This October

October is Dysautonomia Awareness Month
It's time to #MakeNoiseForTurquoise

In fact, On October the first, Dysautonomia International hosted a Celebration on the Canadian side of Niagara Falls to mark the beginning of Dysautonomia Awareness Month, and they lit the falls a beautiful shade of turquoise.

So in honor of this beautiful month of October, I thought I'd write a Dysautonomia themed post.
My form of Dysautonomia is POTS.

Yanno, Postural Orthostatic Tachycardia Syndrome.  Duh.

Anyhoo, for many of us with POTS, hydration is a way of life.   When we think POTS, we think salt and water, and awful compression tights, and a whole lot of fainting.  

Before I get into my hydration tips, PLEASE understand that I am not now, nor have I ever been a doctor.  I am not qualified to give medical advice.  What follows is simply my experience as someone with Dysautonomia, and what I have heard from other people with Dysautonomia.  PLEASE, discuss all treatments with your doctor before …

My Chronic Illnesses as Candy Bars

Having multiple Chronic Illnesses isn't very fun.
But, you know what is?

Candy!
So I am going to try and choose a candy bar to represent each of my main diagnoses  (Lyme, POTS, EDS, CFS, Fibromyalgia).
This post contains affiliate links (pictures) see full disclosure under "links to other sites" or scroll to the very bottom of the page

Lyme- Take 5 by Hershey
Lyme throws so many symptoms your way, it's hard to tell what's going on at any given moment.

It affects every body system, and it's co-infections bring along their own lists of complications.

It is called the great imitator for good reason.
With so many symptoms attacking every body system, it is easily confused with other illnesses like lupus or MS.

I chose the Take 5 bar to represent Lyme because it has pretzels, peanuts, peanut butter, caramel, and chocolate.

It's like the candy bar is attacking all your taste buds the way Lyme attacks all your body systems.   You get salty, sweet, crunchy, smo…

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…