potsyturvy Posted September 20, 2011 Report Share Posted September 20, 2011 I just got back from seeing my ep-cardio and he did a tilt, sweat test, echo, qst, and gastric emptying test. Everything came back mostly normal. He said if I wasn't on meds for POTS and he hadn't seen my numbers before my treatments he would not diagnose me with POTS. I know this is a good thing and means that my meds and exercise are working, but I still feel awful! I have no energy, I have a lot of GI problems (GERD, IBS, constipation), I'm dizzy, and I feel like I am having adrenaline surges (my catecholamine tilt came back negative for hyper POTS). How can it be that my tests all come back normal but I still feel so bad? Quote Link to comment Share on other sites More sharing options...
green Posted September 20, 2011 Report Share Posted September 20, 2011 I don't know, but the same thing happened to me at one point so, you're not alone.At the surface level, I can explain by analogy: if you take Tylenol for a fever and your fever goes down, you're still sick you've just suppressed a sign and symptom. If you secretly took Tylenol before you see the doctor, the doctor might say "you don't have an infection, you don't have a fever." These biomarkers - tilt test, HR variability, etc - perhaps they are mere byproducts of the pathology, not measures of the dysfunction itself? Quote Link to comment Share on other sites More sharing options...
lieze Posted September 20, 2011 Report Share Posted September 20, 2011 It happens to me all the time and I don't get it either.Not that I want anything to be wrong.I almost wish this all was in my head.It's like a best case scenario if you ask me-no offense to anyone else here that is really sick.I think I would just jump for joy if someone could actually convince me that this was purely psychological and there wasn't a thing wrong with me.Praise God I would say.Now the weird thing is multiple other people in my family have the same symptoms are coming down with weird things out of the blue like anorexia out of nowhere in a formally healthy individual.It's just bizarre.I have no good explanations but I totally get it.I pushed on trying to work and be normal 10 months plus into this and it just didn't work.There isn't much normal about this at all. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted September 20, 2011 Report Share Posted September 20, 2011 I can't begin to express how much I empathize! For two years after my initial dx, the POTS was the only thing they could conclusively find wrong with me, but I kept getting sicker and sicker. I was so (initially anyway) happy when I finally got my dx's for EDS type III and Celiac Disease. There are some doctors I would STILL love to hunt down and shove my results in front of their face(s) and shout, "who's a drug-seeking, hysterical, hypochondriac now?!?!" Unfortunately, I would probably immediately pass out from all the jumping, so it just isn't practical. Just remember that numbers don't equal the truth of what your body is telling you. Perhaps it has only been through your careful management that you have not seen any bigger decline? In any case, as other posters have said, the point of all the treatment we undergo is to keep our worst symptoms (HOPEFULLY!) in check, they can't cure us. So I would look at your results as confirmation that you are doing everything you can to take care of yourself as well as possible, and I will be hoping that continues to work out relatively well for you!Sandy Quote Link to comment Share on other sites More sharing options...
Guest maia Posted September 20, 2011 Report Share Posted September 20, 2011 I absolutely agree with green. You said the catecholamine tilt... not sure what that is, but have they checked your urine/blood adrenal hormones? catecholamines, noepinepherine, epinepherine, dopamine, etc... reclining and standing, 24'urine? might be something to look into if not. Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted September 21, 2011 Author Report Share Posted September 21, 2011 That totally makes sense Green. I think it is weird that I feel worse than I did a year ago when I was diagnosed, but because the meds make my heart rate and bp look normal the doctor thinks my POTS isn't causing the problem and that it is something else. Thanks everyone for responding! It makes me feel better knowing I'm not the only one who looks like I should feel better when I don't. Maia, the catcholamine tilt was a tilt test where they measured the norepinephrine, etc while laying and while standing. It all came back normal. I had a 24 hour urine test a year ago and the catecholamines were normal in it too. Occasionally my norep has come back a little high on blood tests, but not enough to concern the doctors.Sandyshell, lol. I have sooo wanted to do the same things to some of the doctors I've seen too!! When I brought up 1st brought up POTS to my primary, he said he'd bet money on it that I didn't have it. Once I got the test results back that I had it, I totally wanted to be like "In your face!! Now pay up!" lol Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.