POTS Syndrome

[PotsPatient23]

Hello everyone! I am 23 years old and was just diagnosed with POTS. This is all very new to me. I have had the symptoms of two years now and everyone kept telling me I had anxiety and panic attacks. I knew it wasn't that. I was never given the tilt table test but when i was hospitalized they diagnosed me over my 3 day stay. I feel weak, tired, moody, irritable, dizzy, sudden butterfly sensations in my stomach, sometimes if my bmp get too high I experience syncope. They have put me on florinef, midrodrine, lopressor and still no luck. I have had to leave work because my episodes were so bad I felt like I was literally dying. I get really sudden headaches with some confusion when my bp drops or gets too high. Sometimes my heart shoots up to 120 when im just watching tv. Basically I was just wanting to see if you other pots patients feel the same way or if i was misdiagnosed. I would appreciate any and all feedback to help me feel at ease or that im not alone. Im still not sure what caused me to get pots. I mean I never had children (miscarriages) not sure if that would be a factor. No big diseases other then this. Im very healthy never get sick, was diagnosed with migraines in 6th grade but other then that i was always active with cheerleading, dance and gymnastics 6 days a week. Please help me with any information you may have thank you

Very Tired of feeling so bad

[nopearce]

I have been to a lot of doctors who cannot figure out what is wrong with me for the last two years. My cardiologist has had me on several blood pressure meds that don't seem to work. I have worn heart monitor which shows sinus tachycardia. I had spine surgery and went into some kind of crisis where my heart rate would go way up just from trying to grab a cup of ice. My oxygen level was low. I couldn't breathe, had a horrible migraine, and was vomiting profusely. They gave me clonodine and steroids which eventually got me out of the crisis. When I got home they weaned me off of clonodine and things started to slowly get bad again. Some of the blood pressure meds made me feel worse instead of better. Right now I am on Bystolic, because it is the only one that helps my diastolic pressure.

I know that I produce no ATCH or cortisol which has my doctors thinking I have secondary adrenal insufficiency, but I get high blood pressure and a fast heart rate when I stand up. The longer I stand, the worse it gets. I cannot exercise, sleep, or stand for long. If I decide to go somewhere, I must rest all day or the day before in order to do it. Then, if I overdo it, I feel sick. My symptoms are just like the ones for a pheochromocytoma, but they are doing a MIGB and can't find it. I go tomorrow for an MRI. If it is not there, could I have hyperadrenergic POTS, since some of my labs show an elevation of plasma norepinephrine?

[Lisa'65]

I have POTS as a result of lupus. I was diagnosed and am being treated by a cardiac electrophysiologist. He did a "tilt test" to diagnose me. I was made to wear special panty hose to help with the blood pooling in my legs, increase my salt & water intake, and prescribed Midodrine. I have not had to take the Midodrine because the leggings and increased water/salt has helped tremendously!! I see a rheumatologist & neurologist for my lupus & narcolepsy, but they do not treat my POTS... only the cardiac guy does. I hope you've gotten some help since you posted.

[nopearce]

I just came back from the doctor today, and ordered a table tilt test. He said I may have dysautonomia with my secondary adrenal insufficiency. He had me do 6 squats and then I got very dizzy and weak. He told me to keep a "dizzy" journal so that I could pinpoint what I do to feel better when I'm dizzy. I told him that what easy; I rest.