POTS and MCAS

[Inez]

Has anyone noticed their POTS improve after taking Mast cell stabilisers or other MCAS medications?
I haven't found a POTS med that helps me so I'm hoping mast cell stabilisers might. My POTS has flared after the vaccine at the same time as other synotoms like runny nose, itching, pain so I'm thinking my POTS might be caused by MCAS or related to it in some way. Has anyone else found this?

 

[Booble]

What kind of MCAS medication?

I'm a POTS and MCAS person. (Not formally diagnosed but pretty obvious on both.)

I've never really noticed the two going hand-in-hand but I've lived with both all my life so I'm kind of used to it being "normal."

 

[Rufous McKinney]

I've abruptly developed very low blood pressure over the past ten days. Following a major dysautonomia event.

As a person with high blood pressure, I can't even explain this. I'm in a much worse state post another possible viral reactivation/gastroperesis.

My stomach is emptying. But this BP is really low.............no tachycardia currently...I'm too weak to stand for long.

Last week, took lots of hot magnesium baths and had alot of tachycardia...

 

[Learner1]

I've abruptly developed very low blood pressure over the past ten days. Following a major dysautonomia event.

As a person with high blood pressure, I can't even explain this. I'm in a much worse state post another possible viral reactivation/gastroperesis.

My stomach is emptying. But this BP is really low.............no tachycardia currently...I'm too weak to stand for long.

Last week, took lots of hot magnesium baths and had alot of tachycardia...

How's your pulse? Have you tried getting a saline IV! I had a similar thing happen, and the IV fluids helped.

 

[Learner1]

I've abruptly developed very low blood pressure over the past ten days. Following a major dysautonomia event.

As a person with high blood pressure, I can't even explain this. I'm in a much worse state post another possible viral reactivation/gastroperesis.

My stomach is emptying. But this BP is really low.............no tachycardia currently...I'm too weak to stand for long.

Last week, took lots of hot magnesium baths and had alot of tachycardia...

How's your pulse? Have you tried getting a saline IV! I had a similar thing happen, and the IV fluids helped.

Please get care if this continues.

 

[Rufous McKinney]

How's your pulse? Have you tried getting a saline IV! I had a similar thing happen, and the IV fluids helped.

Please get care if this continue

Thank you..

my HR is Ok.....as long as Im not doing anything.

60s 70s.......oddly very calm feeling.

I realize this should not be happening...I"m being very limited in what I'm doing and likely will call my doctor next week if this does't show something...

I'm on rich noursihgin soups, minerals, no longer dehydrated

 

[Rufous McKinney]

and the IV fluids helped.

I did the severe viral gastro event and went to the ER: July 2018.

that was the most awful place to be, while this awfully sick nor do their pills work.

But yes, I got some IV fluid in the ER and nothing else.

 

[vision blue]

@inezella i find my mcas and auto dysfunction wax and wane together- but since i have t found a reliable way to to control either, i cant supply data for your proplosed expt. The closest to normsl ive felt for both conditions is H2 blocker and hgabapentin but for various reasons i cant stay on them continuously

Have you tried snything yet fir madt cells and has it affected the pots?

 

[Rufous McKinney]

Have you tried snything yet fir madt cells and has it affected the pots?

Quercetin seems possibly helpful for Mast Cell....

 

[vision blue]

Quercetin seems possibly helpful for Mast Cell....

Has it helped you? It agrees with me (rare!) and maybe helps a little. Maybe i havent taken enough to make a big difference. How much are you taking?

 

[Rufous McKinney]

How much are you taking?

looks like a tiny bit is in my Life Extension Multi (15 mg) and then I take one in the late morning...800 mgs.

I take the quecetin when I won' t swallow anything else. I seem convinced it helps with swelling (angiodema, lymphedema-type stuff)...I can get very intensely.

Usually I get a Vitamin D and K-2 in at the same time.

(I am extremely pill-averse. I don't like them, I resent them, I take very few, often they are still sitting here, ignored in their little glass (I use a mescal glass, to hold my dosage). I never took birth control pills either, and literally since I was sixteen, won't take their pills.

(I am still off my blood pressure meds, but my cuff died and I can't measure any longer, so I"m afraid I have to lay out another $80).

 

[Booble]

Quercetin never did anything for me.
And I'm like Ruf and don't really take any pills unless absolutely necessary. Not just necessary. But absolutely necessary.

 

[Booble]

Reactivating this thread...my POTS has been flaring for the last few days and now I'm getting angiodemas on my arms. Yesterday I had my typical one hive (non itchy) that came and went. Today I have multiple under the skin itchy lumps that came out of nowhere. Is this an MCAS thing?

 

[vision blue]

Reactivating this thread...my POTS has been flaring for the last few days and now I'm getting angiodemas on my arms. Yesterday I had my typical one hive (non itchy) that came and went. Today I have multiple under the skin itchy lumps that came out of nowhere. Is this an MCAS thing?

whats the hive that comes and goes?

 

[Booble]

whats the hive that comes and goes?

On my inner upper arm, usually about 1/2 way between elbow and shoulder. It usually doesn't itch though sometimes it does. Usually goes away in 24 to 48 hours but sometimes stay longer.
Looks like a mosquito bite.

The angiodemas are more under the skin lumpy and itchy. Usually on the lower arm rather than the upper.