u/CKrazyA

I was picking up a box in a room with mold exposure that had all my supplements and meds, and then suddenly I got this big whiff of mold to the back of my nose. I just got so mad — I didn’t want my stuff contaminated. I took all my meds out, took the box to the shower, and then my mum started getting mad about what I was doing, but I kept proceeding anyway. We had an argument, and then when I left the bathroom where I was cleaning the box, I suddenly got so emotional and started crying — just non-stop crying.
Then my brother also caught the whiff of mold from the box and said he got that heart drop feeling — that feeling when you’re scared and your heart drops. I have been getting that as a symptom for almost two years now. I had to learn how to control it but it was horrible and torturous, just constant.
That just made me more emotional because I’ve been saying mold is an issue and they didn’t believe me at first, and they’re still going to try to clean stuff and move soon, but I feel like they don’t have enough urgency as me.
Now the front of my head is burning and my nostrils are burning too. I was just so emotional after everything.
So yeah, just a rant — if anyone has a similar experience. I tried to tell my mum it’s the mold making me emotional and I just needed comforting, and of course she didn’t understand.

Months before developing POTS, I noticed I couldn’t generate power in my VMOs (Vastus medialis oblique). I first noticed it on stairs, then months later it got worse and caused knee pain. As more months passed I developed constant tachycardia, not just on stairs, and was eventually diagnosed with POTS. I also have MCAS symptoms that respond to histamine blockers.
Over the months of being housebound it has been declining progressively, though it fluctuates daily — some days I can’t walk properly, other days I can walk back and forth down the hallway.
My left leg is significantly worse than my right. This became apparent after I attempted a quarter squat on it and immediately developed severe tachycardia, dizziness and a full symptom flare. Since then my left leg has been different. I believe I had a foot drop gait at one point which has since improved, but what continues to worsen is my ability to lift myself up from low positions. It has progressed from difficulty on stairs to now being unable to manage slight inclines without my heart feeling wrong and my legs unable to generate the required power.
I have no reflexes on the bottom of my left foot. Another doctor identified this but my neurologist said the doctor probably is not because she test other people and the reflexes can like do werid things idk how to explain and moved on without investigation.
I have raised all of this with my neurologist but she has largely brushed it off, saying to wait for IVIG to work. I have been on IVIG for 3 months with no improvement to this symptom.
I researched thiamine given its known effects on high energy demanding muscles like the VMO, and began a slow titration. However at a small dose I developed severe nocturnal hypoglycaemia and had to stop. I subsequently discovered through an ancestry test that I carry a variant in the LIPT1 gene, which probably affects lipoic acid sufficiency at a mitochondrial level. I am currently trialling R-lipoic acid in small doses and may revisit thiamine once the R-lipoic acid is established.
What I cannot explain is why the symptom fluctuates with walking on flat ground but consistently fails when generating upward force on stairs or inclines?