Dysautonomia Darkside

03/28/2026

My daughter sent me this. Laughed because not only do I relate, but I refer to my MAST Cells as Gremlins:
Don't feed them after Midnight, even other times are tricky, Don't get them wet, hot showers are a challenge especially with POTS. No bright lights, fluorescent or sunlight, that's a given for both POTS and MCAS. Add that, they cause random havoc and it feels like a perfect description....

https://www.facebook.com/share/r/1DdKMUa8vx/

01/13/2026

There is a sub-group of people with Dysautonomia who have what is called Hyperadrenergic POTS or HyperPOTS.

Most know POTS to have the characteristic fainting when standing too fast, HyperPOTS can present very different.

I've included some basic facts, but Dysautonomia or malfunction of the Autonomic Nervous System can have many symptoms, some of which are very uncommon but still real... and not well understood, researched, or even agreed upon.

If you have this condition, or suspect you do, feel free to comment or ask questions in the comments below. Sharing our stories could help others to figure out some of the symptoms they've been fighting to understand.

This is for information purposes only, not to diagnose anything.
Please be kind when discussing issues as we are not medical professionals, just others with chronic illness. Thanks!

01/13/2026

After experiencing a group where the admin didn't even know the basic information for 2 of her own conditions, I realized that a base explanation could be a helpful starting point, as that person was spreading misinformation to others.

This is only a starting point. It doesn't mean you do or don't have them based off these descriptions. There are also many things not included, just fyi...

03/05/2025

https://www.houstonmethodist.org/leading-medicine-blog/articles/2024/oct/an-emerging-disease-cluster-links-pots-mcas-and-hypermobility-to-severe-gi-symptoms/

A new Houston Methodist study connects postural orthostatic tachycardia syndrome, hypermobility spectrum disorders and mast cell activation syndrome with severe GI symptoms.

08/04/2023

Working on the idea of putting poles together. Not sure how they work. 1st... who has standard Dysautonomia vs. Hyperandrogenic?
Do you Faint or loose complete consciousness? Or Stay semi-conscious and feel everything?

08/03/2023

I would like to welcome anyone who has chosen to join my page.
*** First and most important, I am not a Doctor.
***I will not give Medical opinion or diagnosis, and this page isn't for that purpose.
***We can set up a section on Doctor recommendations by area.
***We can discuss symptoms and our experiences. You are welcome to offer positive suggestions and support to others.
*** You are free to ask questions, but let's be kind. Many are suffering in lots of different ways.

**Please feel free to post funny memes. We can all use more humor.
Lots of love and gentle hugs.

08/03/2023

I have EDS which is know by the image of a zebra. The thought is that when a doctor hears hoof beats not to assume it's a horse. Sometimes it is actually a zebra.
I once heard on a TV program:
When you hear hoof beats don't assume it is some wild crazy illness, it's usually just a horse. Meaning sometimes the easy diagnosis can be correct. While that can be true... It was incredibly insulting (and misleading) for so many who suffer with invisible illnesses, diagnosed or not!

I have the version of Dysautonomia known as Hyper-adrenergic POTS or Hyper-POTS.
My condition is unusual even to the unusual. Even those who know the terms, Dysautonomia or POTS, are unaware of this complicated version of Dysautonomia.

I thought about it and decided those of us with this condition are more like a unicorn. When I start adrenaline dumping I actually feel like I could circle the earth a few hundred times...
Winged Unicorn?

08/03/2023

So I had thought I was unique in dealing with the Autonomic Seizures... but I am seeing more and more posts suggesting maybe I'm not. This page is just starting with no plan, but I'm thinking about having anyone who has these seizure type events join together here and maybe we can raise awareness somehow and maybe help each other deal with this horrible side to Dysautonomia. If nothing else learn how to help ourselves.

08/21/2022

Welcome to the Darkside...
Invisible illness is a hard thing to live with. Mostly we look like everyone else, but on the inside, our bodies have a very different story to tell.

I decided to start this page to share information and maybe help others who are also searching for something...
Anything that may help.

I welcome you to talk, tell your story.
I ask that everyone be kind. It's not an easy road we walk.

My main focus is on Dysautonomia because that seems to be where my story has changed dramatically. I have EDS and Mast Cell Activation Syndrome too, and really it all blends together. ❤️ 🦓