Jessica_ Posted December 17, 2018 Report Share Posted December 17, 2018 So I have been feeling very on edge lately and I have been having more surges. I messaged my neurologist and his nurse instructed me to go to urgent care and get my electrolytes checked since my potassium and magnesium have been low previously. I went to urgent care and they did the poor mans tilt table and checked my HR & BP laying, sitting, and standing. Blood pressure didn’t budge and my HR went up to 130 for like 3 seconds and went back down to 80 and stayed there. Is my pots gone? Or can it fluctuate and you can have days where HR is relatively normal. I am not on any meds today so a beta blocker did not affect it at all. I still feel so off and have surges so can you still have Dysautonomia without Orthostatic Intolerance? Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted December 17, 2018 Report Share Posted December 17, 2018 Your symptoms can vary. Also if they did the poor man's improperly (which they have a habit of doing) it can skew the results. I had a poor man's done 3 times, and my son once in a doctor's office. They did them all differently and they all said I was fine. Did it myself, and an actual TTT twice and I have POTS. My symptoms can vary by day and some people can vary by the time a day. Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 18, 2018 Report Share Posted December 18, 2018 I agree with @StayAtHomeMom - most physician practices do not know how to do orthostatic Vital signs in a proper way ( it takes about 20 minutes to do it correctly ). Look up the instructions for the correct way on thedysautonomiaproject.org . And yes - symptoms will vary. You might even be able to enjoy remission for several years. Most people do get ups-and-downs on an ongoing basis. Quote Link to comment Share on other sites More sharing options...
MeganMN Posted December 18, 2018 Report Share Posted December 18, 2018 I am newly diagnosed so am still figuring this out but I have entire days that are fine, sometimes just bad mornings, sometimes whole bad days, and had almost no symptoms for years, then it came back. So, yes, I think you can have symptoms stop for awhile, be intermittent, or change depending on your hydration, stress level, etc! Quote Link to comment Share on other sites More sharing options...
bunny Posted December 18, 2018 Report Share Posted December 18, 2018 Just echoing what the others have said, especially MeganMN's comments. My body generally either works reasonably well, or doesn't. There isn't much middle ground for me. Hydration/sleep/food all can make a difference. I've tried various meds over the years and while it may have made the vital signs & bloodwork look pretty at the Dr's appointments, I often felt worse than I did beforehand throughout the day. There's a similar story for bisphosphonates for osteoporosis -- they make for great bone density test results, BUT make for absolutely poor quality & fragile bones. Go by what your body tells you. A Dr sees your body for 15 minutes (if you're lucky), while you live with your body 24/7. Quote Link to comment Share on other sites More sharing options...
Jessica_ Posted December 21, 2018 Author Report Share Posted December 21, 2018 Thank you all for your replies. The next morning my heart was racing as usual and it dawned on me that my Orthostatic Intolerance is usually way worse in the mornings and this doctors test was in the afternoon. Plus I agree, it probably wasn’t done correctly. His nurse did it very quickly. I think I am just flaring lately and like you all said, this illness is constantly waving and flowing. Thanks again, god bless us all. Quote Link to comment Share on other sites More sharing options...
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