emma banks

New Member
I have EDS and POTS. I suspect mast cell activity too. I have however been tested by urine and blood for mast cell syndromes but it came back negative. But I profile so well for it.

I react to all the even slightly higher histamine foods, and fragrances. Garlic and onion are terrible for me too. I'm alcohol intolerant and hungover after even a sip. I am constantly out of breath, have blacked out while running for the bus, and have had heart attack type symptoms on lifting - an ECG showed nothing.

I can't eat much during the day otherwise I'm hit by heavy fatigue that can lead to not being able to physically move. Only my eyes not my body. (I think that is a POTS low blood pressure thing.)

But one thing that no one on the POTS forums relate to is that I am unable to eat after say 5pm - I've made that a cut off. If I eat even a small meal in the evening, or handful of food, I have POTS autonomic symptoms the next day. When bad I can't stand or walk properly. I last at dinner over a year ago now. It seems that something is happening in the night. I get hotter as the night goes on and wake up with tremors, flushed red face, nausea and generally feeling terrible. And often feeling really adrenal. I recently read that mast cell activity happens more at night and that this can trigger nerve stimulation that could be causing POTS problems. Anyone have the same issue ? Any thoughts welcome.


Active Member
Hello Emma;
We are all so very different. I too cannot eat past, even sometimes 4pm.
Try going to bed earlier, it may shift your circadian. If I change my sleep times, it somehow shifts the diet thing.
For many yrs. When all hell broke loose I never slept for 7 years...eyes wide open....I was much like whitney dafoe in many ways (100lbs) I think pretty close to deaths doorstep.my mcas was off the charts.i moved to 5 different homes
Sleep for me is what seemed to turn the corner.i stuffed tissue in my ears and put on headphones and began getting little bits of sleep, then I tied a rope to my door knob to pull myself up and managed to get myself down the hallway.That was the start for me.
To me sleep and any form of movement made things somewhat better.it took decades to get to where I am now...I am nowhere near where a normal human being is.im still waiting for my light bulb to turn on.
Keep trying different things is what I tell people.hope this helps

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