my leaky vessels and Me (ME)


Senior Member
Londonderry, Northern Ireland.
i wanted to write quick thread for note keeping and when all is fresh in my head.
Suffering from ME for quite some time, (10 years i noticed) but tiredness prevalent since '97 or so. I do remember air hunger pre-2000 but in your early 20's like most things you brush it off.

i've had bouts of angioedema since then, face, gums, brain ( i think as head gets sore), so without doubt this is documented as vessel leakage.
Does my POTS and ME get worse in these bout, totally. I get pre-load failure in heart also, then it double a double beat to get re-aligned or whatever. High HR on standing all that crap. Thirst always gets much worse, i think the gut stops retaining water or whatever, I dont know.
In lay terms, I think this is the loss of fluid etc in circulation due to excess leakage from vessels/muscles etc.

Normally, all this is presented a day after high volume of histamine attacks, which is usually triggered by allergen (yeast extract/malt/gluten etc)
I think my mechanism ensures my gut also becomes leaky - why wouldnt it, its very evident elsewhere - face is like a watermelon, huge puffy eyes etc - why should the gut get a pass out?
So our body trying to maintain orthastic equilibrium whilst we are leaking like sieves, then HR spikes etc,

So, i am quite convinced the whole process starts in the gut, allergen triggered in my case, mast cell destabilisation, leaking vessels across the board, in effect like a slow downed version of a anaphylaxis over a period of days instead of a life threatening instant episode. Extreme vulnerabilities to sugar in these times, i think its just hitting the blood way too quickly and causing more body distress.

Certainly for me, as I imagine for most, the POTS symptom is a good marker of our physical state, I use HR as a bellweather for current condition, and in my case, undoubtly linked to the mentioned above.

Ketotifen i find excellent to maintain mast cell stability and trigger avoidance obviously


Senior Member
Most of this does have origins in the gut. There can be a lot of immune reactions which cause damage to the gut and produce lots of toxins which circulate in the body.