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Please help I think I have POTS but am having a hard time getting a diagnoses

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by beverly78, Jan 19, 2014.

  1. beverly78

    beverly78

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    So about 4 weeks ago I woke up in the morning like normal and took a shower. By the time I got out of the shower my heart was pounding. I took my pulse and it was 150 so I sat down. It went down some but when I got back up it started going up again. I decided to go to the emergency room since it really scared me. On the way I got a really bad tightness in my chest. I called an ambulance because I thought I was having a heart attack. Things are just getting worse as the time passes. The cardiologist says my heart is healthy. He does not want to diagnose me with pots for some reason, but put me on florenf and told me to drink lots of liquid and sodium. This is not good because I have no appetite, this started because I was having a tightness in my throat and chest after eating that would eventually go away after burping, but it would take hours some times. I have had GI issues ruled out. Another doctor said it was all anxiety, so I asked why would my anxiety go away just because I was not moving? Apparently it can do anything. I am even waking up with my pulse 150 I originally thought it was because I was moving in my sleep, I realized last night I did not move and it was just the act of sleeping that made it go up. IS this POTS? Can anyone give me advice or help? Even rolling from my back to my side is increasing my pulse, is this typical? Do people still work with this?
  2. kisekishiawase

    kisekishiawase sad

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    southeast asia
    similiar to me. though i have GI issues. sleeping, lack of sleep, eating triggers palpitation tachycardia to me too. often have tachycardia during sleep/after.
    but my symptoms got reduced a lot when im in better/good condition so it comes and goes. also ive never passed out from standing up. and there are times when im ok/no problem standing up.

    what confused me when you lie down and still get it. it doesnt seem like pots?
    its also similiar to IST. excessive increase of HR over minimal exertion. even changing position on bed could caused mine to go hyper sometimes.
    i had a hard time to since theres no pots dysatonomia, cfs me specialist here.

    seriously ive been searching hard what makes the heart randomly goes crazy when sleeping/after/some lack of sleep.
    Last edited: Jan 27, 2014
  3. SickOfSickness

    SickOfSickness Senior Member

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    There are some neurologists that specialize in autonomic disorders. If you do not have one nearby, try and find a neurologist who knows enough to do Tilt Table Testing.

    Most ME/CFS patients have either POTS, NMH, or another type of OI (Orthostatic Intolerance). So if your symptoms do not match POTS exactly, you may have another form.
    ahimsa likes this.
  4. SickOfSickness

    SickOfSickness Senior Member

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    But read the threads on TTT. Some of us could get worse from having one.

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