LovelyNova

220d

Having my tilt table test tomorrow! Any tips? During today’s physical exam with the laying and standing bp check, my bp dropped 20 points when standing. He said that was interesting because it did not fit the POTS criteria as well having a high heart rate while sitting did not fit the criteria. Any thoughts of what it could be or questions I should ask him tomorrow?

Ehlers-Danlos Syndrome (EDS)

Dizziness

Chronic Headache

Nausea and Vomiting

Disorder of Autonomic Nervous System

Dyspnea

Postural Orthostatic Tachycardia Syndrome (POTS)

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  • Lunarr

    220d

    It may not be POTs but it could very well be another type of dysautonomia, the autonomic nervous system is really weird and complicated when it doesn't work properly but everyone always jumps to POTs or nothing which is inaccurate. Hope you find some answers!!

    • SunInAugust

      170d

      this is a great answer! I was thinking the same thing. Where do you go to get more answers when someone thinks its just POTS when it could be any kind of dysautonomia?

      • Lunarr

        170d

        To my understanding there is little medical discussion of non-POTS dysautonomia, which is why doctors tend to jump there first I think (it's all they know/are aware of). Though I know POTS has some pretty solid diagnostic criteria so if you fit into it that is most likely accurate. If you don't fit it and they are diagnosing you with it anyways, that's an issue. If you're questioning a diagnosis I think you could ask your doctor why they think POTS is the right answer and if they have considered other possibilities like vasovagal syncope, orthostatic hypo/hypertension, etc.

  • Caeda

    218d

    Would you be willing to tell us about your tilt table test experience? I have one scheduled this week and would really appreciate any information!

    • LovelyNova

      212d

      I’m so sorry I didn’t see your comment until now. Did you have yours already? If so, how did it go? I almost passed out during mine. I was a bit worried that results would be skewed bc I was actually feeling okay that morning. But sure enough, the symptoms appeared within seconds of the tilt. My blood pressure dropped, HR increased, and I had blood pooling in my legs and feet.

      • Caeda

        208d

        it’s no problem at all, and thank you for sharing! Wow, I hope you were quickly stabilized and comfortable. Was there a diagnosis after those results? I did fine with the tilt, minor fluctuations, mostly dizziness. Because no symptoms presented they administered sublingual nitro glycerin. That rocked my world, almost went down after that but was told my reaction was normal. My legs started to give out and even though I was strapped in the nurse had to hold my knees up. Spinning dizziness, pouring sweat, nausea (the nursed did the alcohol pad trick, it helped) , shortness of breath. Luckily no major headache! Thanks again

      • SunInAugust

        170d

        that is crazy! I worry that when I have a doctors appointment scheduled I will wake up feeling fine and have no symptoms and the doctors will say nothing is wrong. Dont get me wrong, itd be great to wake up with no symptoms. But its strangely affirming to hear from you that the test shows what its suppose to

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