margiebee Posted June 5, 2013 Report Share Posted June 5, 2013 So as I've said in a couple other posts, I have been really focusing on exercise and getting healthy, and I do feel that I have been making improvements although I still have some symptoms. Today I saw my POTS doctor, and my blood pressure actually increased slightly upon standing and my heart rate increased only a small amount, no tachycardia. I know I should see this as an improvement, but it is kind of strange after being sick for so long and making only relatively minor changes in lifestyle. Has anyone else had normal test results for HR and BP during a time of improvement? I had a tilt table test 4 months ago that showed a drop in blood pressure and increase in HR of over 50 upon standing. Quote Link to comment Share on other sites More sharing options...
margiebee Posted June 5, 2013 Author Report Share Posted June 5, 2013 Also my doctor has scheduled me for a QSART test and hemodynamic testing. Any insight on that? Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted June 5, 2013 Report Share Posted June 5, 2013 Hi Margiebee, I'm really happy for you- that definitely sounds like good news!To answer your question - I had a normal TTT 6 months after being diagnosed. During my first TTT my BP dropped and I fainted (I don't normally do that). I also had an increase in HR of almost 60 bpm when they tilted me. Now, 17 months after being diagnosed I still have an increase in HR when going from supine to standing, but a lot more manageable than what it was last year. There is hope Alex Quote Link to comment Share on other sites More sharing options...
margiebee Posted June 5, 2013 Author Report Share Posted June 5, 2013 Thank you! I do feel very blessed that all my hard work, despite how little it might seem to others, has been causing pretty drastic improvements. I suppose its just the drastic nature of the improvements that is so shocking to me. But I suppose I have always had periods of time where I feel my symptoms wax and wane so it does make a little sense, I just wonder if that pattern is common with POTS Quote Link to comment Share on other sites More sharing options...
BadBadBear Posted June 5, 2013 Report Share Posted June 5, 2013 I have a few days of normal BP's now and then - yeah it seems drastic and amazing. I get excited that I'm better, and then - thud - it goes back to 'normal'. I think it's one of those things that you just have to really, really enjoy the healthy time that you have and do the things that you have been unable to do. Health is a gift, and if you are getting well - have fun for yourself and the rest of us!!BTW, last time I was at the doctors office was during a 'good' two days, and my BP was perfect. It figures! - Michelle Quote Link to comment Share on other sites More sharing options...
margiebee Posted June 6, 2013 Author Report Share Posted June 6, 2013 Ah I suppose its good to hear that other people have had this, I just hope it sticks around as long as possible. My doctor seemed really enthusiastic about my exercise routine and thinks that is a huge part of it so hopefully its not a fluke Its so funny that I am literally not used to getting "better" Quote Link to comment Share on other sites More sharing options...
dpeeps Posted June 8, 2013 Report Share Posted June 8, 2013 Hey Margiebee - I have many periods of feeling great with very few symptoms. Right now I am really good. The tachycardia really never leaves, and most days I will have moments of lightheadness, a little dizziness, but who is complaining? Those are the good days!!I have had days, weeks where I felt so good that I was convinced I was "cured". Unfortunately, the more bothersome symptoms always return. I have learned not to panic when they come and tell myself, "I will feel good again, I have been through this before". Everyone is different, so your experience may not be the same as mine.I was physically very active when I had my first major flare last year in March (2012), so in my case it was not due to deconditioning, etc.In any case, I am glad you are feeling good. Enjoy it, whether it lasts a day, a week, or forever ....you know it is possible Quote Link to comment Share on other sites More sharing options...
margiebee Posted June 8, 2013 Author Report Share Posted June 8, 2013 Its actually pretty funny because today I feel pretty bad again, not sure if the tachycardia has returned because I haven't gotten my home HR monitor yet but I'm almost positive my blood pressure dropped back down, I get this miserable feeling in my head like a headache when its low and I can always tell. I am beginning to notice a pattern of dehydration when I get worse vs. better, unfortunately it is SO easy for me to get dehydrated. Like, literally if I drink a half glass less of water in a day I become very dehydrated. Go figure haha Quote Link to comment Share on other sites More sharing options...
dpeeps Posted June 9, 2013 Report Share Posted June 9, 2013 Yep, my best friends are V-8, gatorade and water. I am sooooo sick of drinking water, but if I don't stay hydrated, I pay the price!!! Quote Link to comment Share on other sites More sharing options...
seattle chris Posted June 9, 2013 Report Share Posted June 9, 2013 Regarding your inquiry about the QSART and hemodynamic test:I took the QSART test a few months ago. You feel some prickly sensations but it wasn't bad at all. My results were normal, but a doctor recommended that I retake due to the fact that I took aspirin beforehand (which they indicate can skew the results).I recently took the blood volume and hemodynamic test at the Cleveland Clinic. The test took about two hours and was also fairly easy - they inject you with dye and draw blood at certain intervals. The blood volume test indicated that my blood volume was 25% greater than predicted, likely due to the florinef that I take. They recommended that I subsequently cut the dose in half (and eliminate my afternoon dose of midodrine), given that I had recently dealt with episodes of high blood pressure. The test also indicated that I was very slightly anemic so I started taking a daily iron supplement. The hemodynamic test indicated that my heart was functioning properly. Quote Link to comment Share on other sites More sharing options...
margiebee Posted June 9, 2013 Author Report Share Posted June 9, 2013 Thank you! I think I had pamphlets on all of them from the Cleveland Clinic (that's where I go) but I lost all of them, of course. During the blood volume test were the blood draws to test hormones and stuff like that? I thought I had remembered that being mentioned from a previous appointment I had but I can't recall, I am really antsy to get those checked out. My doctor does not want to put me on any new medications before I get those tests done because I am very very sensitive and I am (somewhat) successful with lifestyle changes, as this post sort of illustrates. Quote Link to comment Share on other sites More sharing options...
jangle Posted June 10, 2013 Report Share Posted June 10, 2013 Improved vitals are an excellent sign, but even more important I believe is their consistency. Unfortunately I have had much improved numbers only to go back to bad vitals. Also important is the duration of your standing. If you're going to have tachycardia it usually happens within 6 minutes. Unfortunately I have good vitals that gradually deteriorate to pots within this time span.But again everyone is different but I w oils suggest going off of how you feel versus what the vitals are telling you as they can be wildly inconsistent. Quote Link to comment Share on other sites More sharing options...
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