Thank you everyone for the warm welcome and advice Reading through the forum, hearing stories I can empathize with, and seeing all the support mskes me feel very happy!
@Pistol absolutely, I've always noticed the more energy the more I move. I make it a point to get out of bed by a certain time, make the bed, and get dressed, even if I just move to the couch. Luckily I have 6 rescue animal (3dogs, 3 cats) that keep me moving lol. Unfortunately some days just consist of sleep but it's something I continue to work on.
@StayAtHomeMom I was late teens/early adulthood at my worst, and was your son's age when the symptoms became concerning. I can't change my medication because I wouldn't be able to get a new appointment in time, but talking to my PCM about restarting medication. I've been off for a couple of years after I stabilized. Was doing so great with my symptoms and was even in shape and going to the gym! I was on disability from age 18 to 24(?) but after i stabilized decided to get off of it and work.
My Dysautonomia history is quite a story and I hope to share the whole thing over time. Going from disabled with debilitating symptoms, to stable and able to work, back to ground zero has been the hardest hit and I feel devastated. I worked so hard and sometimes wonder why I should even try to overcome this syndrome/disorder when it's always going to be a part of my life. Even if I tried though, I'm unsure if I would even be able to get back on disability.
From my understanding, there's nothing wrong with my heart. My vagus nerve is the issue and sends the wrong information to my brain who then tells my heart to stop. No doctor has yet to find the underlying condition that causes my Dysautonomia.
@bombsh3ll yes I do I be also have done the "poor man's" TTT recettly and plan to keep a log. My blood pressure and HR are also normal when laying and sitting down but still feel pretty crummy. Like right now I'm sitting back with my feet up but feel like I'm not getting enough oxygen and have to take deep breaths to rid the dizziness. My heart rate also likes to skyrocket for no reason sitting down, making me feel sweaty and trembly almost like an anxiety attack (but with no anxiety).
So AGAIN that this is so long! I just have so much to say and never get to talk about it to anyone, especially to people who understand.