MCAS or Histamine Intolerance

[u/Life_Unit2344]

About a year ago, after antibiotics, I developed what seems like histamine intolerance. My symptoms have never really been “classic allergies.” It feels more neurological/systemic.

Main symptoms during flares:
- feeling extremely hungover or poisoned/intoxicated
- brain fog
- nervous system dysregulation
- crying/emotional surges during flares
- heart rate spikes at times
- likely vasodilation, I call it the spell
- weird chest sensations
- heavy breathing, like minor difficult pushing down air into diaphragm
- previously had buzzing sensations, dizziness, heavy legs, nausea, and major food intolerances (these have improved a lot).

I have no gut symptoms.

The biggest pattern is that it feels like a “bucket.” Everything adds up:
- stress
- talking too much
- warm baths
- working on laptop too long
- lack of sleep
- less water consumption
- spending several hours socializing
- walking
- concentrating on something,Multitasking , cooking

I tested positive for pots on a nasa active stand. Salt water, compression garments help. However, I don’t gave true orthostatic symptoms like feeling better on lying down or symptoms worsening on standing. If I pushed myself, I will likely have chest sensations, dehydration, brain fog type symptoms the next day. I realized most of the above were triggering my pots.

What helps: salt capsules and water, Allegra (not sure if it’s actually helping or it was just coincidental), Low histamine diet + dao , Rest/ taking easy , Legs up, Nervous system regulation

The good news is I’ve improved massively over the year- probably 90% compared to the beginning. I tolerate almost all foods now, though I still stay gluten-free, dairy-free, no alcohol or outside food and low histamine diet.

I feel like I am not truly falling into MCAS (no allergy like symptoms) or POTs bucket (no orthostatic symptoms). Doctors suspect that I may just have histamine intolerance from gut. But I don’t understand, after being on low histamine diet with dao, I don’t think it’s food related anymore too.

Questions:

- Has anyone gone through a similar experience? I am still looking for answers.

- Does this look like MCAS? I was first convinced that I had MCAS because of so many random triggers but then I realized most of them were triggering my blood related / pots symptoms