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Dysautonomia (Autonomic Dysfunction) Community
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Avatar universal

POTS? What do you think of these symptoms?

I'm new here. Warm greetings to all!  I'm a thirty-something mom, twenty pounds overweight, no drugs, alcohol and am on no prescriptions.  I don't even drink coffee or take aspirin.  

I went to the ER for the second time in my life, when I thought I was going to have a heart attack.  It turns out I had a really bad tachycardia presyncope episode.  They suggested a panic attack, because the chest x-ray and MRI came back negative.  I have no history of panic attacks.  I answered that a panic attack makes the heart race.  My heart raced first, with no help from me!  After the ER, I went to a family doctor, who gave me a Holter monitor test (negative), and a cardio, who gave me an exercise stress test (positive for tachycardia) and an ultrasound (no structural abnormalities of the heart).  He also found an "innocent" murmur and lots of PACs/PVCs (extra heart beats).  Another doctor said it's possible I have a connective tissue disorder, such as Ehlers Danlos, but I would need more tests.  I don't often go to a doctor, so I haven't had the tests yet.  On the Beighton score for hypermobility, I score 5/9.  Also, I have subluxable shoulders, varicose veins since I was a teenager (early onset varicose veins), easy bruising, and wound healing with thin, wide "papyraceous" scars.      

This morning, before rising, I had a heart rate of 80 bpm.  Immediately upon standing, my heart rate rose to 133 bpm.  After 2 minutes of standing, my heart rate rose to 140.  Taking my heart rate again at 5 minutes and ten minutes it was still 140 bpm.  So, my heart rate rose a total of 60 bpm within 2 minutes of standing upright.  This is how I always have been.  

When I stand, I will often "gray out" and feel faint, but not actually faint (presyncope).  My legs are cold to touch, and have a red-blue discoloration when I stand up after lying down (acrocyanosis).  I had more severe presyncope when pregnant.  I've had exercise intolerance ever since I can remember.  As a kid, I was active and a newspaper carrier always on a bike, but I couldn't keep up with the other kids when running in PE class.  When running for just a little while I have graying out, presyncope, tachycardia, nausea, shakiness.  I have the same symptoms when biking uphill or biking fast.  When I walk up the stairs, I often feel lightheaded and gray out.  I almost fainted once while driving.  I had to pull over by the side of the road and bow my head until the feeling went away.  My blood pressure tends to be around 110/70.  I haven't measured my supine vs. standing bp, but I ought to do that too.    

What do these symptoms sound like?  Thanks in advance for your thoughts, everyone.

4 Responses
492869 tn?1285022533
Your symptoms do seem Dysautonomia-like in my opinion.  Even panic attacks, or anxiety could potentially be caused by POTS.  I'd recommend seeing a Cardiologist in a teaching hospital for diagnosis.

Since you've already had other testing done, the Tilt Table Test would seem like the next logical step.  Although your new Cardiologist may have differing opinions about your previous test results.  Be sure to bring copies of your previous test results to your appointment.

In the meantime, try to lay down for a few minutes when you are experiencing symptoms.  Avoid too much exposure to heat, and be sure to stay hydrated.  I hope you feel better soon!
612876 tn?1355518095
Welcome.  Halbashes pretty much covered everything.  The only thing I would add is that there is a strong correlation between Ehlers Danlos and dysautonomia (particularly POTS), so if that what your diagnoses end up being, you won't be alone.  There are several others on our forum in that same boat.  

Good luck getting a diagnosis!  Let us know if you want some tips before you have your tilt table test.
Avatar universal
Thanks for your thoughts and welcomes.  I really appreciate them.  It appears these years of not knowing what's wrong will come to a close soon.  I'll update more as things unfold.  Peace + a happy day to all.
728243 tn?1258387056
Reading you message caused me to remember when I was about 36 or so I was always at the doctor's office.  We had moved to a new town so he didn't really know me well.  One day he suggested that I didn't have anything wrong with me and just came to see him.  I was so angry I started to cry.  Then he told me to stand up and do a couple of squats holding onto his desk.  Then he took my BP again and it was sky high.

Most recently I tried a new drug COREG.  For some reason my BP moved rapidly up.  It's like it spiked and then gradually came back down.  I had such a terrible reaction I am wondering now if I didn't have a mini-stroke or something.

I also "grey out" when I climb the stairs and am cold all the time.  I think mine is poor circulation and diabetic neuropathy.  

Dentists are bad news for me because a lot of them do not understand that you
actually can have a reaction to epinephrine.  Just a few weeks ago I went to a new dentist and he argued with me that some dentists give the shot wrong and put it directly into the blood stream and that is the only time a person reacts.  The dentist before him after we discussed it for several minutes, when I did come in for treatment, accidentally gave me the ephinephrin.  The really terrifying thing was that he thought I was just afraid of the dentist and kept on drilling after I started to shake all over and my heart was beating rapidly.  I could have died that time.

Rapid heart beat is also caused by a lot of other things.  I just realized not suppose to take sudafed and stuff like that.  I wish there was a list of drugs they would tell us about when we can't take ephinephrin so we could avoid.  My thryoid meds were also part of cause of tachycardia ... rapid heart beat and skipping beats.

It's all very frightening.
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