Top 7 Signs & Symptoms of Dysautonomia
Difficulty Standing Still
Fatigue
Lightheadedness
Nausea and Other GI Symptoms
Brain Fog or Mental Clouding
Palpitations or Chest Discomfort
Shortness of Breath or Difficulty Breathing
Do you have any of these?
One thing I hadn’t noticed for a long time was number 1 - difficulty standing still. I would rock and sway when waiting in lines. I would see other people standing still, but I never did.
Until that one time. Indian Summer in Milwaukee, 1995. A friend and I were there, and we all were standing while the procession began. I tried to be as still as possible, without swaying. And ended up passing out. Ambulance was called. They came and got me, I didn’t “come back around” until I was at the hospital.
Remember, this was 1995. No one had cell phones. (My dad had a “bag” phone for his car). My parents were on the phone with me before they left the house for the hour plus drive to me. I remember them telling me to NOT sign anything (I was 18). I also recall the hospital trying to get me to sign forms when I wasn’t even fully coherent.
That is the event that got me diagnosed. MRI. CT Scan. All the tests they could do. And referred me to a cardiologist, who did a tilt table test. Which I failed (passed?) fabulously.
Very few doctors had heard of Neurocardiogenic Syncope or Dysautonomia at that time. And the internet then is not what the internet is now. He started me on Norpace. Which helped a little.
I trained my first service dog for Dysautonomia 5 years later. At a time when it was hard to find information, and no one could help me with it.
But it wasn’t until Dr Trevino - 20-something years later - that I got some real medical relief. I won’t be cured. But between the meds and the service dogs, I am able to function more like a “real” person.
I’ve lived with Dysautonomia my whole life. When I was around 7, I remember playing outside with friends, going to the bathroom, and waking up on the floor of the bathroom. I thought I was tired and just needed a nap…
As a teen, I wasn’t allowed to take HOT showers. Or lock the bathroom door. Because of the number of times I had passed out.
This is why I do what I do. This is why I am passionate about Dysautonomia Service Dogs and how they can help. Because I’ve been there. I know what it is like. And I know no one should have to go thru it all alone.
