I never meant for my Apple Watch to become my personal cardiologist, but there I was, staring at a resting heart rate of sixty-nine beats per minute one minute, then watching it leap to one hundred thirty-one the next, without so much as a trip up the stairs. My gut tightened every time I shifted from lying to sitting, sliding onto the edge of the mattress and feeling my pulse pummel my temples. When I finally paused to chart a full week of “bed-ridden because AuDHD shut me down” days, my watch grumbled out values from forty-six to one hundred forty-eight beats per minute with zero workouts logged and no pain spikes in my alphabet-soup diagnoses. I knew chaos when I saw it, and this was a perfect storm of unexplained tachycardia.

Digging through every paper I could find, I discovered the rule for adults: a jump of at least thirty beats per minute within ten minutes of any upright change—lying to sitting or sitting to standing or even standing back down—without a drop in blood pressure greater than twenty over ten, persisting for at least three chaotic months. No pedantic pediatric caveats, no cute childhood comparisons; this was a grown-up’s criterion. My body obeyed it like clockwork. Lift my head, slam—pulse racing. Swing my legs over the bed, slam—pulse pounding. Rise from the toilet, slam—pulse pounding again. Each simple gesture felt like a heart-testing experiment, a cruel dance between gravity and my frantic autonomic system.

I started to trace every trigger. A lukewarm shower became a gauntlet: the steam curling around me while my vision dimmed, my knees quivering under an invisible vice. At home, a minute outside in July turned my hyperhidrosis into a battalion of sweat beads, skin slick and skidding, cold chills coiling up my spine. Lines at the grocery store transformed me into a tableau of pale desperation—leaning on carts, scanning the shelves without focus, jaw clenched so tightly it ached. I never thought “steaming coffee breath” and “lean-on-anything” posture would define my evenings.

I carried a silent resume of might-could-be-EDS: hypermobile elbows that folded back under my own power without any help, toes curling past ninety degrees like a contortionist’s secret, knees that kissed my chin at will. My fingers bent backward toward my wrist in a way that made typing a gamble with hyperextended knuckles and made my writing by hand so painful despite loving it so much. I slept in a twisted pretzel with one leg curled to my chest the other trailing straight, arm bent under my pillow as if supporting my neck a bit more, the other hand clutching my duvet bent in at the wrist (chest (t-rex hands is a common reference )—my body’s safest configuration, if only to avoid the sudden heart-thumping when I shifted not to mention the pain from the permanent injuries from a bad car accident. IBS bloomed on its schedule, digestive upheaval or bloat flaring unpredictably; bruises mottled my arms and thighs, sometimes even my stomach, each one a mysterious bruise that I somehow hadn’t felt and there was no sleepwalking caught on my security cameras, as if my connective tissue was an open bruise buffet.

Nausea drummed in my belly constantly, a chronic subtext I’d learned to treat with GI cocktail meds and migrainous cluster-level neurotreatment—none of it touched the constant queasiness. Then I discovered salt. A wild pinch of pink Himalayan salt instead of sugar in my morning Cream of Wheat tasted oddly gourmet it was the color that caught my attention through the horrid brain fog going on that day. I then tied in the fact I felt better then usual later in the day it kept my nausea at bay for hours—hours in which I could function wondering if I should have a bowl in every room just in case. So, I tried this again on purpose this time with the sugar not forgotten this time and the same thing I was feeling great for hours.

Then I recalled how I would feel better on days I drove and the difference was I would be proactive with my random ass glucose drops that now aren’t so random with my rabbit hole that lasted weeks at this point so far. I would feel better those days as well and of course I was well aware that it is high in electrolytes so can help with fluid replacement just like Pedialyte for kids. I decided to try some of that same salt into plain water, a dot of Kool-Aid for AuDHD sensory delight I found out I did it for the sweet and to hide the salty taste if I am totally honest and it added a bit of sugar as well given it is Kool-Aid, felt like a sports drink on my tongue not sure if everyone notices this texture difference from a sports drink but that is what it tasted like and just like the sports drinks it helped so much. Sodium and fluid—two simple ingredients—seemed to reset my day in ways that prescription anti-nausea meds never could. Because this leads to the most common cause… my body must be starving for volume, I chugged toward the recommendation: ten to twelve grams of salt per day, two to three liters of fluid, plus the usual fludrocortisone whispers from my neurologist after some digging. Low and behold I am feeling better, pain levels are lower then they have been in so long in even my car accident injuries. I started to get energy and less chronic fatigue from what I thought was just ASD shutdown from sensory overload caused by the pain. Yea not the case apparently. I actually am getting stuff done with a bit of a nudge and not getting overwhelmed instead some of my ADHD squirrel brain was back to being calmer like it had been in medical school instead of since that damn accident.

Compression stockings arrived from Amazon first, an off-brand gamble that tightened my calves enough to slow the blood-pool panic and improve circulation which are some of the causes that can contribute to diabetic issues related to the feet. Suddenly I wasn’t just having my feet nice and warm but I could stand in one place without feeling my centripetal collapse, without frantically wiggling my toes like we are taught to do in band class or for those with who are military in parade to stave off faintness or out right fainting or as I like to say “going down” I am not sure if this was related to my medical military parade training or is common with all parade training it is what we were taught to say. I can’t for the world of me remember why though. Simple cheap pretty compression stockings that don’t indicate the pressure level. Something to make it so my toes wouldn’t get so cold they were hurting horribly desperation driven thing. What a change! In those stockings, I no longer looked like I was auditioning for a fainting couch scene whenever the line at the pharmacy edged forward. Or trying to look like I am just fine while I really am not if I am honest delights of AuDHD masking for me. Blending in and masking crosses all over to the things that can make me stand out and I suspect this is a common issue with anyone who masks.

There was also the hit-and-miss parade of mast-cell activation: hives erupting like angry red volcanoes, a suspected allergy you’d never pin down because next week you’d eat the same food and be fine. Year-round sneezing fits that begged for an inhaler, yet spirometry couldn’t explain it. EDS, IBS, and this POTS suspicion weaving a tapestry of autonomic dysregulation. The hyperhidrosis where I would be sweating so bad I was humiliated when standing outside in -40C for several minutes this calmed after my neurologist suggested hyperhidrosis and that isn’t his medical focus and I got on some meds to help from my gp. This was during a treatment appointment for my chronic cluster migraines. My chest would tighten, palpitations dancing under my sternum, and I’d assume I was having an acute coronary party until the absence of any other red-flag signs convinced me I was just… hyperadrenergic or more commonly known as all in my head. Nothing I knew medically indicated there was any cause and it was just my body being random. Again another danger of trying to blend in with ASD, ADHD or AuDHD, you are so used to trying to be seen as normal we can convince ourselves that other odd things the body is doing is all in our heads and not to be mentioned. In other words convincing yourself that it is normal and no big deal when they are actually damn dangerous signs!

Three different doctors from this week of appointments and phone appointments and more medical crap then I care to think about. One internal medicine surgeon, a doctor in one of my specialty teams, and the delightful walk in doctor agreed that the symptoms mirrored their textbook suspicion. This was without me mentioning EDS, Reynolds, POTS or hypermobility related complications being mentioned they were just getting my medical history for there part of my care but couldn’t file the POTS paperwork until I survived a tilt-table marathon and seen a specialist so they can’t put it down as a diagnosis because it is outside their scope of practice therefor be in a lot of trouble if they did. The cardiologist who never met me even on the follow up of a 24 Holter monitor test for the heart rate diagnosed me with tachycardia (high heart rate) and sent me on my way. I’m waiting for that goalpost, that official stamp, while I ride every postural change as if it’s a free‐fall drop. My HRV swings—from seven to fifty-five milliseconds on one day, ten to a hundred-three on another—tell their own tale of autonomic whiplash. There’s no neat pattern to comfort me, just wide-open chaos. Plus, my delight in medicine and liking to try my own theories while I wait for the specialist and tests needed. Why wait if there are things you can try at home easy enough such as adding a bit of extra salt for a few days? Why be miserable when you could at least reduce the impact it has on your life? I don’t see a valid logical reason unless you had something like high blood pressure or cardiovascular issues that say you shouldn’t do something such as the extra salt then that should be guided by a doc for safety just know your shit to so they can’t gaslight ya and say it is nothing when it is. Always leave comfortable you know the cause, reason, and understand everything that is being done or not done in some cases. A hint? Say “can you document why you refused treatment for these symptoms in my medical file” it makes them cover their own asses and actually do their job. Stop being a compliant patient (there is a post on this that is a bit older) and hold these humans with a god complex in the medical field like we would deal with any other prideful person with a god complex who can do no wrong. It’s your life and your body simple as that. If they give you fuss please feel free to reach out to me for some guidance. I delight in doing the Leroy Jethro Gibbs smack (for the NCIS fans out there) on the back of the head even from a distance. I want to work myself out of a job as an advocate would love nothing more then that. Advocacy is not just about fighting for your rights; it’s about empowering yourself and others to ensure that everyone receives the care and attention they deserve. But what happens when your advocacy efforts seem to hit a wall? How do you navigate the challenges that come with standing up for yourself? Find out more in part two, coming tomorrow.