POTS

[Ari_eliz]

My cousin was diagnosed with POTS after a two year struggle of searching for a diagnoses. During that time I began to suffer severe fatigue, a bouncing BP, and stabbing stomach pains/gastrointestinal issues that were unexplainable. After roughly a year, those went away but on Mother's Day I woke up feeling very dizzy, lightheaded, and nauseated. After it didn't subside by that Monday, I went to the hospital where they gave me fluids... it was then when I noticed my heart pounding and my BP bouncing again. I noticed with the slightest movement my heart felt like it was beating way too fast and it caused me to feel short of breath.

A month later, here I am searching for a diagnosis. I saw a neurologist who did a test and told me I had syncope since when he sat me up and stood me up, I nearly fainted and would've if he would not have sat me down.  he sent me to a cardiologist who I am hoping will listen to me about POTS. I have so many of the symptoms..I am just afraid that my results from a TTT will not qualify for a diagnosis since if I move very slowly into an upright position I manage to be there for a bit before I start to feel weak and sickly. My chest feels like it is pounding but when I check my own pulse- it doesn't seem so high.... 96 and higher when standing or sitting but if I am laying down it rests at 70ish. My blood pressure does drop but not always systollically under 100 but the rest of my symptoms along with what feels to me as tachycardia and a dropping BP. I was just wondering if anyone knew what the qualifications were to get a diagnosis with Dysautonomia/POTS.

My symptoms are as follow:
Vertigo
Lightheadedness
Syncope
Nausea
Stomach cramping and pain
Irregular Bowels
Fatigue/exhaustion
Night Sweats
Tachycardia
An all over BP
Restless Legs
Weakness (As an emt, I could lift people three times my size now walking is a challenge)
Shortness of breath
Heat Intolerance including Overheating
Cold Intolerance
Fogginess. (I am usually a really sharp person but now I have trouble finding the right word)
I get tired when I eat
Leg swelling
talking makes me tired

Do you think I am on the right track with the POTS/Dysautonamia theory?

[LivingInHope]

Well, generally, a diagnosis of P.O.T.S. is supposed to be made on two criteria (though I had an electrophysiologist base my diagnosis on the tilt table test results alone)- a heart rate that increases by more than 30 beats a minute between lying down and standing up (you should give at least a minute of standing to start with before taking your pulse to allow your body to normalize if it is going to).... a positive tilt table test for P.O.T.S., and a standing plasma norepinephrine level of greater than 600, if I recall correctly.  With the tilt table test, I think they can also check for NCS (neuro-cardiogenic syncope)

When you have all the symptoms you do, it is best to try to look at other potential causes of them before pursuing in ernest whether or not you might have dysautonomia.

The heart rate increases to prevent passing out, though in some with P.O.T.S., the body does not succeed.  In others, like myself, I've found my body can overcompensate and my blood pressure will actually spike with standing.

Some of the things you describe makes me think in your work-up they should be:
A) doing an heart work-up, including an echocardiogram to try and rule out CHF (congestive heart failure)... with your leg swelling, shortness of breath, fatigue, etc. and a doppler of your carotids with your brain fog, etc. and ask for a holtor monitor & get a fasting lipid blood panel to check your cholesterol and triglycerides level.

B) testing your thyroid function (see private message),

C) your female hormonal levels... with night sweats, nausea and tachy, etc.,

D) an HgA1c and blood sugar level... with fatigue and nausea, weakness, rapid heart rate- check to see what your blood sugar's doing

E) ferritin and iron, T.I.B.C. (total iron binding capacity) and iron saturation percentage (see private message for symptoms of iron deficiency)

F) kidney function testing (weakness, swelling, shortness of breath, red blood cell count reduction w/anemia)  Also a CBC (complete blood count)

G) blood potassium level- with weakness

H) B 12 level- with fatigue, shortness of breath with minimal exertion, nausea;

I) also get checked in general for a vitamin B and/or magnesium deficiency with the restless leg problem as well as ask about dopamine testing with restless legs

J) Neurologist work-up with passing out, brain fog, trouble finding right words, weakness

K) orthostatic blood pressure and pulse testing

[Dina723]

Hi! Well you certainly have many symptoms of dysautonomia, with POTS being one of those conditions. First, I think you need to determine if it's your blood pressure or heart rate, or combination of both that could be causing your symptoms. For your HR to be a symptom of POTS, it must increase 30+ beats within 10 minutes of changing positions. That's the "P" in POTS. So if your HR changes 30+ beats from lying to sitting, or sitting to standing, you have the hallmark symptom of POTS. While you are sorting this out, be sure to drink lots of fluids, preferably with electrolytes-but not sugar- and try to stay as active as you can. Like walking if you can, or using a recumbent bike if you can't safely stand. You have to try to push activity. It's hard to do when you feel so sick, but it helps! Let us know how you are doing.