So my PCP thinks that I have POTS and she's sending me to a cardiologist to have a test done. Has anyone else had this test done? What is it like? I don't know anything about POTS. She thinks I have it because I faint a lot, am constantly dizzy and nauseas, especially when standing or sitting up, faint in a hot shower or with heat at all, get flush all the time, have stomach pain. Does this sound like POTS?

So I am curious...what is POTS? Those who are in anaphylaxis will pass out from triggers such as you mentioned as well, although it is accompanied by other anaphylactic symptoms as well (not just losing consciousness) that generally require emergency care.

I started with anaphylaxis then had POTS flares on high dose steroids which became constant orthostatic tachycardia and hypotension.

This has improved with time for me be it time, mast cell meds, more exercise, trigger reduction. Keys when I was bad were to eat small meals, drink tons of water and stay on my feet even though my body didn't want to.

They are recognizing a type of POTS that they think is caused by mast cell degranulation hopefully the doc you see is familiar with this. First line treatment is usually same as mast cell treatment some require a few extra meds...

I never had a formal TTT but there is a "poor man's tilt" you can do at home. Let us know how it goes.

EXCELLENT ADVICE, Lisa!!

Hi Crystal.,,, I have Hyperadenergic POTS, the type of POTS associated with Mast Cell Disease. Just as other diseases/disorders have different types, so does POTS. Those of us with Hyperadenergic POTS (H.POTS) may or may not be hypertensive. There is a paper about the connection between H. POTS and Mast Cells: http://hyper.ahajournals.org/content/45/3/385.full

Typically, symptoms of this type of POTS can be seen in childhood, although symptoms may be so mild they are overlooked. Pre-syncopal episodes are very common, but only about 1/3 of ppl actually pass out. Unfortunately, I have been one of the 1/3. Not a pleasant experience.

Personally, I would not neglect either area... POTS or Mast Cells.. since the science is so young in Mast Cells. For example, one thing that helps define H. POTS is high Nor-epinephrine levels. Since Neuropetide Y (a Mast Cell degrangulator) is co-released with Nor-epinephrine, reducing the Nor-epinephrine levels can help with Mast Cell degranulation.

Just another opinion.

Take care, Gail

Wow thank you all very much for all of the information, this has been so helpful. I guess the difference I am seeing between what my "normal" mast cell disease symptoms and my possibly POTS symptoms are that pretty much everytime I sit up or stand up I feel like I am going to faint or I do faint. I am constantly lightheaded and dizzy and nauseas. But this could also be from all of the meds I am on. I will let everyone know how it goes. I have a consult with a Cardiologist on September 18th and then he will decide if he wants to do the TTT or not. Thank you Lisa for the advice, I am definitely not going to neglect Mast Cell disease either. It makes since that they are related as I never had these symptoms until I started with my symptoms for my mast cell disease. My PCP is finally referring me to Dr. Castells and Dr. Greenberger at Brigham and Women's!!!!! I am so relieved, now just waiting for appointments to be scheduled. Hopefully Dr. Castells will have more insight into the possible POTS as well. Thank you Gail for the article, I will read over that. I am hoping this Cardiologist has some mast cell knowledge, but from my experience I can never assume anything like that. Maybe I will print this article out and bring it to my appt. Some doctors like this, some have too much of an ego to like it. I will let everyone know how it goes. Thank you Pam for reassuring me about the TTT, it sounds like they have to inject you with a stimulant and I am petrified to have any medicine injected for testing since I have had so many severe allergic reactions to Contrast dye.

I have to jump in here.  I've had the type anaphylaxis you are describing.  I've been to the ER 3 times for it and they said you are breathing fine.  Last year I was sick and took Amoxicillan Clauvenate (antibiotic) and the next day went back to the doc and said I can't breathe from this med.  He said you don't look like someone who can't breathe.  Also last year I went to ER for headache for 3 days and got Benadryl drip and starting not being able to breathe.  I ripped IV out of my arm because no one took me seriously.  Holy crow this infuriates me now knowing this was indeed anaphylaxis.

How's about we start a class action suit against the medical community for lack of care!  Yeah!

I believe I have POTS and went to cardiologist for a work up thinking he would diagnose POTS.   After he said oh your heart looks fine.  I asked if I had POTS and he said oh I don't check for that.  So be sure they are testing for POTS and not just a cardio work up.  I have Mitral Valve Prolapse and there is a MITRAL VALVE PROLAPSE Syndrome that is Dysautonomia!  I bought 2 books on it from AMAZON.  I am tired beyond belief.  Antihistamines make me worse.  I'm not taking any antihistamines right now.  Just Zantac and ketotofen eye drops.

I also have autoimmune chronic urticaria.  

I'm dizzy often and have tinnitus.  Symptoms are so random.  Always moving.  Always something.

Crystal, you are welcome. I hope the paper helps, and you will find some relief soon.

Deborah, it's all good. I have worked hard to understand the difference between these two disorders...H POTS and MCD ...since I have both. The one thing MCD cannot seem to explain, at this point at least, is the high Nor-epinephrine (NE). And it may be that the high NE is the reason some of us don't have the typical anaphylaxis since one function of NE is to help keep the airway open (relax smooth muscles in the airway).

PJP, if it is any help...I was initially diagnosed with MVP with Dysautonomia. This type of Dysautonomia is now typically H POTS.

Gail