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Dysautonomia (Autonomic Dysfunction) Community
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Avatar universal

Think I'm going crazy, Pots Or Lupus?

Hi. I'm 28 yrs old. For 3 yrs I've been having health issues. While pregnant I started having issues with my heart,  the cardiologist said it was do to my weight and it would go away after pregnancy. But out only got worse. My HR can be anywhere from 110-150 while standing/walking. Lowers when at rest. This leads too chest pain and difficulty breathing. I have dizzy spells, joint pain, memory loss, sensitivity to hot or cold, blue extremities, recently my BP has been increasing, physical and mental fatigue, slurred speech, I don't feel as strong as I was. Things that were once easy are now so hard. I've seen another cardiologist that believes I have dysautonomia, but turned me away bc he "couldn't" help me.  My neurologist is not sure what's wrong, she sent me to rheumatologist. That doctor doesn't seem to take me serious. My ANA is positive, but he doesn't think it's lupus. He tested me for hep a,b and c. Which came back normal.

Please help, I'm starting to think I'm crazy.
1 Responses
Avatar universal
Your symptoms sound like they line up with pots. My doctor did a tilt table test to confirm..I was put on the medication Midodrine which has helped with feeling like I was going to pass out and chest pain but the shortness of breath is still bad and the sensation of being drunk is still there...I've read that it sometimes takes a major physiological change to stress your autonomic system and have this happen..
When my "heart" stuff started my PCP wanted me to see a heart doctor and since we knew I have dysautonomia, my PCP wanted me to see an Electrophysiologist...it made all the difference in the world..my neurologist said he didn't know what to do too..lol thankfully my EP doctor did..I'm scheduled for a pacemaker this month.. he says it's a  blood flow issue within my brain that can only be detected by doing an ultrasound Doppler on my temple simultaneously while on the tilt table..I've had lots of tilt table test, but the Doppler show the amount and intensity of blood flow..
I hope this helps
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