• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

my leaky vessels and Me (ME)

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
so,
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
 

LINE

Senior Member
Messages
832
Location
USA
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.