Guest veryblue Posted July 9, 2004 Report Share Posted July 9, 2004 Does anyone on here have POTS and get a rise in blood pressure when standing? Link to comment Share on other sites More sharing options...
calypso Posted July 9, 2004 Report Share Posted July 9, 2004 I don't get a rise in BP when standing, but I don't get a drop either. Well, I take that back -- if my BP is running high when sitting, it will sometimes drop a little when I stand, but it doesn't bottom out or anything.I was told by my doctor that the BP changes with sitting/standing/etc. are a sign of autonomic dysfunction, whether they're high or low. The idea is that the regulation system of your body is screwed up, so it can't maintain things during normal changes in body position. So if there's a significant change, it's probably this sort of dysfunction.Amy Link to comment Share on other sites More sharing options...
futurehope Posted July 9, 2004 Report Share Posted July 9, 2004 I do or should I say did. I'm not sure it goes up as much as it used to. Have you had your thyroid hormone levels checked? Mine was going up more then than it is now. My thyroid hormone levels used to be a bit high. And Calypso is correct, if there is nothing else (like elevated hormones) causing the rise, then your ANS may be having trouble adjusting to the change in posture. Dr. Goldstein at NIH did a TTT on me and said he suspected that the longer I stood up, the higher my BP and or HR might go. So, I'm not a fainter, just a "I feel rotten when vertical" person. Do you feel bad when you're vertical? Link to comment Share on other sites More sharing options...
Guest veryblue Posted July 9, 2004 Report Share Posted July 9, 2004 no I feel fine when vertical...I'm just scared that I'm going to die because of this and nobody cares about finding out whats wrong with me but me! If this is how life is going to be forever then life is a big fat joke! Link to comment Share on other sites More sharing options...
futurehope Posted July 9, 2004 Report Share Posted July 9, 2004 If you don't mind my asking, how did you find out about the rise in your BP upon standing if you had no symptoms to clue you in? Usually people do not take their blood pressures. You seem really upset about something and I'm still trying to figure out what you are upset about? Link to comment Share on other sites More sharing options...
nantynannie Posted July 10, 2004 Report Share Posted July 10, 2004 Hi there,During my tilt table, I was hypertensive when I first stood up. My blood pressure did not fall until 25 minutes into the test. Ann Link to comment Share on other sites More sharing options...
Guest veryblue Posted July 10, 2004 Report Share Posted July 10, 2004 I found out about my rise in BP at the doctors office...that inspired me to go buy a blood pressure cuff. I'm so freaked out cuz during my tilt my BP was normal, no drops, no rises, then I started getting drops, now rises...I'm just scared that I'm going to die over here! I fell so alone and clueless! Link to comment Share on other sites More sharing options...
nantynannie Posted July 10, 2004 Report Share Posted July 10, 2004 Very Blue,I noticed during my tilt that the BP was set for every two minutes. I know that my BP drops immediately upon standing and then immediately rises too high. The BP every two minutes is not good enough for me and possibly you too. A few places have new equipment that is able to monitor BP continuosly. I think it will show up abnormalities for us when it becomes widely used. Try not to become too distressed over this stuff. You are not going to die from POTS unless you get so dizzy that you fall off of a boat and hit your head on a rock or something similiar to that. I know the symptoms feel scary and sometimes I am sure that I my heart is going to colapse on itself, but I am quite certain that it is rare to die from POTS. Everyone here has abnormalities of BP and heart rate of one form or another and it seems to change day to day or week by week. Even though we all have a "norm" of abnormalities, every once in a while we are hit with a change and things go haywire. I think it is the nature of dysautonomia.Take care,Ann Link to comment Share on other sites More sharing options...
Guest veryblue Posted July 10, 2004 Report Share Posted July 10, 2004 Its good to see that other people on here have the same problem to some extent. Its just that I didnt have this before and now I do and that is so very wierd for me. On my tilt table my BP was taken every minute. It was very stable...120/75-80ish. Now laying down by BP is 120/75...sitting 127/87...standing 135/90...yesterday after playing softball for 3 hours it was 141/99....very scary. VeryBlue: This post has been edited. Having a rise in blood pressure with POTS does not mean you have a brain stem form that leads to death. Nina, I and others here have repeatedly told you both on the forum and off that you are not dying. Please refrain from making any more posts of this nature, as they will be deleted in the future.Michelle Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 10, 2004 Report Share Posted July 10, 2004 veryblueI do understand how concerned you are. It is frightening when things seem to be going haywire and no doctor can explain it or help. I've been there too. Many of us have.Most people with POTS don't have a brain stem problem, nor do they develop a progressive disease state, like pure autonomic failure. I'll have to look at what you read about the connection of high blood pressure when standing to brain stem problems. Blood pressure changes when standing, sitting, lying down--either up or down are very typical of POTS. Many of us have problems with low blood pressure, others have high, for others it is a combination.I had problems with both, but mostly, elevated blood pressure when standing. That was in 2003. After a year on prozac and a beta blocker, my blood pressure is back to its usual low normal self.Are you on any medications? Have you actually been diagnosed with POTS? If so, it may take time to find the right medications or other therapies to help your autonomic system re-set itself. Remember, most of us do get a lot better, but it can take awhile.Take Care, Katherine Link to comment Share on other sites More sharing options...
futurehope Posted July 10, 2004 Report Share Posted July 10, 2004 Veryblue, You need to stop connecting "There is something wrong with me" to "I am dying". There is a difference. You can have things wrong with you and you can find doctors that can help, or not. But, you need to stop equating "something isn't right with me" to "I'm dying." It doesn't sound like anyone has even diagnosed you with POTS or any dysautonomia for that matter. My blood pressure goes up when vertical and nobody ever told me about brain stem dyregulation or dying. It also sounds to me, despite the BP fluctuations you are experiencing, that you are leading a life a lot more "normal" than others on this forum. The other thing we all need to realize is that nobody guaranteed us a perfectly working body when we were born . Most people have SOMETHING that doesn't work quite right. If you are not experiencing any symptoms, look at the bright side. You ARE able to live your life right now. You haven't died yet. It is not the end of your life if you have something wrong with you. I don't mean to equate you to anyone, but look at Mattie Stepanek the 13 year old who just died of MS but led an inspiring life. And look at Christopher Reeves. Would you have told these people that their lives were not worth living or that their lives were over? You are you no matter what your body is or is not capable of doing. Channel your anxiety into finding a doctor who specializes in dysautonomia. And, of course, they don't have all the answers either. Your life may just have taken an unexpected turn and you may now need to readjust, but your life is NOT over. Link to comment Share on other sites More sharing options...
nantynannie Posted July 10, 2004 Report Share Posted July 10, 2004 Very Blue,I'm no doctor, but the fluctuations in BP you described are normal. I mean normal for a normal person, not to mention POTS. If you end up with a sustained high diastolic, then you might end up needing medication in the distant future, but for now, I wouldn't worry. Also, the pure autonomic failure is characterised by HYPERtension while lying (laying?) down and HYPOtension when standing. This is not what you described, so you should get it out of your mind and leave it alone. The mind is very powerful and it can drag your body down quickly.I "just got this" too. I also have multiple other problems to go along with it. You have to try to focus on the positive and be glad that you have your arms and legs and that you are not in a wheelchair drooling on yourself with a colostomy (sp?) bag. It is not good for your health to be so stressed out on this. YOU ARE NOT DYING!I hope you feel better about this soon, take care,Ann Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted July 11, 2004 Report Share Posted July 11, 2004 VeryBlue: Having a rise in blood pressure with POTS does not mean you have a brain stem form that leads to death. Nina, I and others here have repeatedly told you both on the forum and off that you are not dying. Please refrain from making any more posts of this nature, as they will be deleted in the future.This topic has been locked and there will be no further replys.Michelle Link to comment Share on other sites More sharing options...
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