Annamaus1977 Posted November 27, 2014 Report Share Posted November 27, 2014 "Guten Tag", how we say in Germany ;-)I'm in a hospital now, to find the reason of my sickness. I had tell you in my last topics.So they had make some blood-tests, but i dont know wich tests they make. I will ask later. Also they had make tests, if i can feel warm and cold and pain and touch on my hands and feet. Furthermore they tested if i sweating the right way on my hands, when they stimulate it with a little electric shock. I hope, its the right explanation in english and you know what i mean. All these tests are allright and they cant find a problem.My question to you is, how had they diagnose Pots or Dysautonomia on you??? Which tests had they make for? Is it enough to make a tilt-table-test and how high or low are your BP and your pulse/heartrate??? Many Thanks for awnsering... it will help me so much!!! ♡♥♡With warm regards from Berlin,Andrea. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 27, 2014 Report Share Posted November 27, 2014 Yes, the Tilt Table Test is one of the primary tests used to make a diagnosis of POTS and/or NCS. Catecholamine testing is also common (a blood test), and for me, they also did a nuclear medicine blood test that checked what was my total circulating blood volume (mine was quite low). On our main site, you can find a list of the common tests: http://dinet.org/index.php/information-resources/pots-place/pots-detectionand also there are some good summary medical articles that describe what most doctors should consider when they believe their patient might have POTS.This particular article was written by one of our medical advisory board members, Dr. Raj. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Quote Link to comment Share on other sites More sharing options...
Annamaus1977 Posted November 27, 2014 Author Report Share Posted November 27, 2014 Hi MightyMouse,thanks a lot for your report. Hmmm, today the tests didnt showed it can be Pots or an dysautonomia. I just have the problem that my heart run when Im upright and the other things i told you. But my tests are negativ. I cant understand it... Im so sad, whats going on with me... Hug you ♡♥♡Andrea Quote Link to comment Share on other sites More sharing options...
Praxxtor Posted November 27, 2014 Report Share Posted November 27, 2014 Hi MightyMouse,thanks a lot for your report.Hmmm, today the tests didnt showed it can be Pots or an dysautonomia.I just have the problem that my heart run when Im upright and the other things i told you. But my tests are negativ. I cant understand it... Im so sad, whats going on with me...Hug you ♡♥♡AndreaDid they do a tilt table test and how long did the test last? Have you tried doing a Poor Man's well in your case a Rich woman's tilt table test? You'd lie down for 10 minutes and then take a reading whilst supine and then proceed to stand taking more readings at 2,5 and 10 minutes while standing. If you were to post your results here we might be able to give some advice! If nothing concrete shows it doesn't necessarily mean nothing is wrong. Neurocardiogenic Syncope can sometimes take upto 45 minutes to rear its head! 45 minutes was the length of my TTT!Stay strong! Quote Link to comment Share on other sites More sharing options...
Annamaus1977 Posted November 27, 2014 Author Report Share Posted November 27, 2014 Hi Praxxtor,thank you for your comment,They had made a Schellong-Test 2 weeks ago.So I have the result of my "selfmade-schellong-test" that i had mad in the afternoon:After 10 minutes lying down103/70 pulse 76After 2 minutes standing100/72 pulse 106After 5 minutes standing99/76 pulse 116After 10 minutes standing91/76 pulse 132After 15 minutes standing90/70 pulse 132And when I test it in the eveningAfter 10 minutes lying down100/74 pulse 76After 2 minutes standing96/85 pulse 96After 5 minutes standing98/78 pulse 101After 10 minutes standing97/83 pulse 98After 15 minutes standing98/79 pulse 98much better pulse!!! I've never fainted and i've never felt so. Only a little dizziness. Sometimes I feel it more, sometimes I feel better without dizziness.Hug you,Andrea. Quote Link to comment Share on other sites More sharing options...
Praxxtor Posted November 28, 2014 Report Share Posted November 28, 2014 Well the first result that you did in the afternoon very much so goes hand in hand with a POTS Diagnosis. You just have to replicate it in front of a doctor knowledgeable in Dysautonomia. Sometimes people pass the first TT test and don't get a diagnosis until the second or even third try all because the body decides to behave well particularly on a day you need it to breakdown haha! It's common I believe for POTS patients to see a reduction in symptoms in the evening. Also POTS patients heart rate fluctuates all the time. There are times when we feel crap even when our vitals are fine. Do you notice symptom improvement upon lying down? I've fainted over ten times but then again dizziness really only happens with postural change with me and is never constant like some other folk here. My biggest issues are my eyes and digestive system (stomach, intestines). I guess POTS can manifest differently in all of us but what we all appear to have in common is an abnormally high heart rate. Your pulse pressure appears to narrow quite a bit, might wanna ask your doctors about that too perhaps?Stay Strong Quote Link to comment Share on other sites More sharing options...
Becia Posted November 28, 2014 Report Share Posted November 28, 2014 Guten tag to you as well! I'm actually trying to learn German because I'm bored, and have a friend who is fluent. He one time answered the phone by speaking German, and totally freaked my home health nurse out.Don't have much to add here, other than stay strong like said before. I'm jealous of the ability to stand for 15 minutes, I sadly have about 2 minutes before my body goes haywire enough and I pass out . Quote Link to comment Share on other sites More sharing options...
Annamaus1977 Posted November 28, 2014 Author Report Share Posted November 28, 2014 Dear Praxxtor and Becia,thanks a lot for your help.Praxxtor, Im sorry, but what do you mean?"Your pulse pressure appears to narrow quite a bit, might wanna ask your doctors about that too perhaps?" I cant understand it, sometimes its still difficult to me. Can you explain it or say it with another Words for me? Becia, Im so sorry, that you cant stand for a longer time. I hope it will be better soon!!! ♡♥♡Hey, you need to speak German? I can teach you. ;-)Have a nice day,Andrea. Quote Link to comment Share on other sites More sharing options...
Annamaus1977 Posted November 28, 2014 Author Report Share Posted November 28, 2014 Hey,oh I think Im going crazy ...The next thing thats scary for me!!!Every time when I speak, it makes me go a little dizzy and I get that feeling like I have a belt around my chest and Im sweating much more and feel very tired. What can it be??? "in fear" Andrea. Quote Link to comment Share on other sites More sharing options...
momandmore Posted November 29, 2014 Report Share Posted November 29, 2014 Annamaus, you are not alone. Try not to be afraid.My pulse increases when I speak. When I have been in the hospital, the nurses always pick it up. I can lie down and my heart rate will decrease but as soon as I speak, it increases significantly--not as much as when I stand but it's noticeable. If I spend too much time socializing and talking, my heart rate can become very high and I become a little breathless. Of course, on these occasions I am upright for long periods, too.I have thought it's the dysautonomia affecting my breathing. Sometimes I have to remind myself to breathe deeply and regularly because it doesn't happen normally.I have a friend who visits a natural doctor for her own problems and the doctor recommends that she keeps her talking to a minimum during stressful times to avoid further stress on her body. Quote Link to comment Share on other sites More sharing options...
Annamaus1977 Posted November 29, 2014 Author Report Share Posted November 29, 2014 Dear momandmore,thanks for your helpfull comment.Its hard to me... even at this time I dont know, if this is really Pots. Im in an hospital for diagnosis, or to find out whats going on with me. But the last tests havent show an Pots. Only the Schellong-Test had shows my fast heartrate when Im upright. Everything makes me verry angry, because of these verry creepy symptoms and the doctors doesnt know what this is... Its like an nightmare. With warm regards,Andrea Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 29, 2014 Report Share Posted November 29, 2014 narrow pulse pressure means your diastolic and systolic numbers are too close to each other. Normal is 120 over 80, or 40 pts apart. You have a few readings that are between 11 and 15 points from each other--it makes for very inefficient blood movement through the body Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 29, 2014 Report Share Posted November 29, 2014 And, there are other types of autonomic dysfunction than just POTS... NCS, PAF, etc. Descriptions of each are on our main site. Quote Link to comment Share on other sites More sharing options...
Becia Posted November 29, 2014 Report Share Posted November 29, 2014 Mine increase when I talk, and we discovered in physical therapy, when I raise an arm or a leg, it increases until that is back down. Quote Link to comment Share on other sites More sharing options...
Annamaus1977 Posted November 30, 2014 Author Report Share Posted November 30, 2014 Hi MightyMouse!Thanks for your explanation.Wish you a nice day,Andrea Quote Link to comment Share on other sites More sharing options...
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