Jump to content


  • Content Count

  • Joined

  • Last visited

Posts posted by Yulunga

  1. 43 minutes ago, StayAtHomeMom said:

    POTS always has an underlying cause. It is not a disease but rather a cluster of symptoms. I still have not found mine but I have a high suspicion it is autoimmune since that runs so high in my family. Finding the underlying cause can be hard but in theory if you take care of the underlying cause then your POTS symptoms can resolve. Key word: in theory. 

    Have your doctor's done a urine catacholmine test yet? If not I would ask for it. It can determine if you have HyperPOTS. 

    Actually, I asked the Dr if he could test me for hyperadrenergic POTS, and he ordered the blood test. When I asked him if it would be the catecholamine test he denied and said he would like to do this (cortisol) test first. But now he wats to do the 24-hour urine collection, and yes, I will ask him to check my catecholamines as well.... :) 

    I didn't know that there are various causes for POTS and that they can be individually diagnosed--thus, I thought a treatment is based on dealing with the symptoms instead of attacking the cause! That sounds great! Means there's reason for hope! I hope you'll find another cause than autoimmune so that you can attack the issue at the roots! Good luck to you!

  2. 17 minutes ago, StayAtHomeMom said:

    I had a cortisol test done too. Mine was normal though. Maybe you got really lucky and stumbled on your underlying cause. Hope your doctor's continue on this trend of looking things up to help you. I have met doctors that wouldn't. 

    Yes, I'm hoping that there is another, rather "harmless" underlying cause for my symptoms. But I almost believe that the results just reflect the stress I had the night before they drew my blood--I wake up almost every night with a racing heart and dizziness that can sometimes develop into a panic attack... But who knows? 

    I'm sorry that you've made the experience that your doctor, the person you rely on, refused to help you when you felt helpless! Having this condition is already creepy enough...! So far I'm lucky that I've met only supportive physicians (except for those neurologists, otolaryngologists, cardiologists... before the TTT who said that I am healthy because the results are good! ;) )

  3. Thank you all for your replies! It feels SO good to know that you're not alone...!!!

    I actually didn't get any meds during the TTT, but they were supposed to give me something IF nothing would happen after 20 minutes. So, I collapsed right before that! :D I find it interesting that the procedure for a TTT can vary! 

    Yes, you're right, I should jot down all my questions and talk to the cardiologist who evaluated my test. I'll do that! My family practitioner has never heard of POTS when I asked her for a referral, though, and the Dr. I had my follow-up appointment with (my family practitioner was on vacation) had to google what POTS actually is before we could make plans for what to do next. Thus, I'm glad that this forum exists...

    The next step, btw, was to check my morning cortisol, and it turned out to be twice as high as it should be at the most (got the results today!). We'll do a 24-hour cortisol collection next. I'm glad that it's finally progressing...

  • Create New...