What do you guys think of my stylish new accessory? I had to return it. Not too sad because it was really cramping my style 💅... 😝
I've been quiet because I've been in for ✨yet another round of bed rest and testing✨. Please someone let me off this ride 😂😭 This was my third time having to deal with a heart monitor and this particular model was not waterproof 😱 At least I only had to wear it for 24 hours this time!
Results are in and it seems like after correcting my arrhythmia my heart decided it wasn't done being dramatic. Just got diagnosed with dysautonomia during my follow up to review results. Apparently I developed compensatory tachycardia due to catastrophically low BP.
According to my cuff, it's been dipping as low as 75/50 virtually every time I eat a normal meal (and didn't ever like to hover much about 96/60 unless I was extremely anxious, at which point it'd be around 105/65), and according to the event monitor my HR was jumping to around 150 while simply sitting/laying down in an attempt to keep me going. No wonder I've had to have mandatory floor time at certain points during the day 🫢...
Just started treatment and my goodness has that been life-changing so far. My mood is better, I actually feel rested when I wake up, I'm no longer struggling to walk a straight line at times, I can eat normally again, my vision issues are gone (I wasn't even aware I had them until my vision became clear again 🫢), and what I affectionately refer to as my ice pick headaches are gone. I have a follow up somewhat soon to check that I've been getting the expected amount of relief, and to decide whether I need a second opinion from a new rheumatologist, and/or a consultation with a neurologist to make sure this is just a complication of my already diagnosed hEDS and nothing else. Dysautonomia kind of goes hand in hand with hEDS so I'm hoping there's no separate cause for this "new" issue, and fairly confident we'll find it's "just" hEDS!
In any case, now that I seem to be able to eat a normal amount for the first time in almost a year and a half, I can actually start working on following a meal plan to build up muscle more quickly. That will keep my joints much happier than they currently are and will hopefully result in a lot less day to day pain. If I can just get over that hump then the worst of my health issues should finally be addressed after, I dunno, 12-16 years of very disruptive symptoms and begging for answers? It would make me so happy to just have one single week where none of this was an issue, and it's looking more and more every day like that's actually going to be possible in the somewhat near future.
As always, I really appreciate you guys for all your support and for sticking around! I know the periodic disappearances are insanely frustrating and I'm so grateful you've all been so lovely and patient about it 💙