babettess Posted June 24, 2009 Report Share Posted June 24, 2009 Hi everyone,I just saw my new POTS dr. yesterday for the 2nd time. He looked over every test I have had done in the last year (which was a lot of tests). He wants to repeat my TTT as he said if I just have just POTS that my BP should not have dropped and it did on my last two TTT. Well in March whenI had a bunch of tests at CC, they said I had Early POTS with Diastolic Progressive Orthostatic Hypotension by the TTT results. They also only suggested a skin biopsy to see if I have small fiber neuropothy-even though my QSART was normal. My new doctor says something more could be going on if my BP drops during the TTT. I tried to get him to tell me what else he was thinking I could have and he just said another form of dysautonomic disorder. I specifically asked if it could be NMH but he said, "We just need to get the tests done first." I really like this doctor and he seems to know what he is doing. He even knows about MCAD and is having me repeat my histamine and methylhistamine levels again. Shouldn't CC have told me if they thought something else was going on??So what other form of dyautonomia could he be thinking that I have? The only forms I know of are POTS, NMH, PAF and MSA. I don't have high blood pressure when I lay down, so I thought that ruled out MSA. Does your HR go way up and your BP drop during a TTT if you have PAF? I thought that it was common for BP to drop with POTS???Any help will be appreciated. I'm a little scared cause the doctor called me today and scheduled the TTT for this FRIDAY. I have to be off my beta-blocker from now until the test so I know it's going to be a LLLOOOONNNNGGG wait til Friday. I don't do well without my betablocker.Thanks,Babette Quote Link to comment Share on other sites More sharing options...
all4family Posted June 24, 2009 Report Share Posted June 24, 2009 Hi Babette,I don't really know a lot on this subject, but was wondering if you had already read some of the information on this site on the different types of the dysautonamia's? I will be thinking of you, and hope that your test on Friday goes really good, and you get some good answers. Take care, and try not to worry too much. Suzy Quote Link to comment Share on other sites More sharing options...
babettess Posted June 24, 2009 Author Report Share Posted June 24, 2009 Thanks Suzy!Everything I have read says that your BP can drop so I'm just not sure what he's looking for. I'm just not very patient, I guess.Babette Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted June 24, 2009 Report Share Posted June 24, 2009 well let me know suzy, as mine does now. it used to go uphigh, really high, then change from moment to moment.last visit i admitted i was only showing stand #'s.So when he took me sitting he was rather stunnedhow high My BP was sitting. I did read somewhere thatit can be a change in at least 20 points either way. bellamia~ Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted June 25, 2009 Report Share Posted June 25, 2009 Hi,The BP decrease with standing (and HR increase) are not uncommon with "just" POTS, not all peoples shoots up (mine doesn't, if anything it tends to go down). And for many they may maintain a relatively stable BP. Mine tends not to change much, and I think is more apt to go down than up. If it goes down it means you are getting closer to a faint (or near syncope). So, if anything this leads more to NMS/NMH ("S" is for syncope). So, NMS is a neurally mediated response to standing of syncope or fainting. If you don't faint, but are hypotensive then you would more likely fall under the NMH umbrella. I think for PAF your BP would have to be all over the map, among many other symptoms... Do you have supine hypertension?Here is a link from Vandy on PAF. http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4790Not sure from what you said how much this dr is "in the know"??? Interesting to see what he comes up with and what he bases it on?! Quote Link to comment Share on other sites More sharing options...
jjb Posted June 25, 2009 Report Share Posted June 25, 2009 Yes, orthostatic hypotension can occur with POTS.I have both. Quote Link to comment Share on other sites More sharing options...
babettess Posted June 25, 2009 Author Report Share Posted June 25, 2009 Thanks everybody,I just read a little more about PAF and MSA and I think he must be wanting to rule them out because of some of my other problems such as the swallowing difficulty which can happen with MSA. My BP is usually always low and I have never really seen it high, but I have been on a beta blocker for the last 23+ years and I know they can lower your BP. I have checked my BP at all times laying down and during the night when I wake up and it's never been high. The testing will be in Baltimore so I will be traveling 4 hours. I'm going to go down tomorrow as I know after being off my beta blocker for so long I will not be up to traveling on Friday morning. I guess I'm just going to have to wait until Friday for more answers. I just hope he can tell me something before I leave the hospital. I am not a very patient patient when it comes to things like this. Thanks everybody for trying to help me feel better about this. Babette Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted June 25, 2009 Report Share Posted June 25, 2009 I have both POTS and NCS-- so for a while, my hr soars as my bp stays drops only a little, but after a while, my adrenaline pump runs dry and my bp and hr both drop and I pass out. Quote Link to comment Share on other sites More sharing options...
all4family Posted June 25, 2009 Report Share Posted June 25, 2009 Hi,The BP decrease with standing (and HR increase) are not uncommon with "just" POTS, not all peoples shoots up (mine doesn't, if anything it tends to go down). And for many they may maintain a relatively stable BP. Mine tends not to change much, and I think is more apt to go down than up. If it goes down it means you are getting closer to a faint (or near syncope). So, if anything this leads more to NMS/NMH ("S" is for syncope). So, NMS is a neurally mediated response to standing of syncope or fainting. If you don't faint, but are hypotensive then you would more likely fall under the NMH umbrella. I think for PAF your BP would have to be all over the map, among many other symptoms... Do you have supine hypertension?Here is a link from Vandy on PAF. http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4790Not sure from what you said how much this dr is "in the know"??? Interesting to see what he comes up with and what he bases it on?! The PAF sounds way too much like me. Plus I have the very erradic blood pressure. Suzy Quote Link to comment Share on other sites More sharing options...
futurehope Posted June 25, 2009 Report Share Posted June 25, 2009 Babette,If it's Dr. K you're talking about, he's oriented towards getting a proper diagnosis via testing. He probably does not want to mention possible diagnoses to you at this point because he doesn't have the empirical evidence to prove anything. I'm sure you had a ttt done already elsewhere, right? Is this your 2nd ttt? If so, you have a right to ask why he's repeating?Hang in there. I'm sure you'll know soon enough what's going on. BTW, he said something more could be going on with you. That does not mean "something else is going on". He may find that your diagnosis of POTS is sufficient explanation for everything. Quote Link to comment Share on other sites More sharing options...
babettess Posted June 25, 2009 Author Report Share Posted June 25, 2009 Thanks Futurehope,I just PM'd you and then saw you had written to me. Yep, it's Dr. Khurana. I am still so impressed with him. He spent one hour yesterday just reviewing my records and tests. He says that my BP shouldn't drop if I have POTS. I just always thought low BP was part of POTS. This will be my third TTT. He wants to continuously monitor my BP to see if it's dropping. The other tests didn't monitor it continuously, just every few minutes. I'm also having a Heart Rate Variability test again and a Valsavagal Response test (or something like that).Thanks for your input. You are right he did just say I "could" not I "did". I am usually pretty good at looking at things optimistically. I think I'm just overwhelmed right now. Hope your appt goes well tomorrow.Babette Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 25, 2009 Report Share Posted June 25, 2009 Some specialists believe that orthostatic hypotension suggests that you do not have POTS. This is however not a conclusive statement as som doctors and leading researchers in POTs believe that the orthostatic hypertension is just an exagerated response to blood pooling and not the actual problem. Orthostatic hypotension from low norepinephrine release is being treated with LDOPA successfully. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted June 25, 2009 Report Share Posted June 25, 2009 Babette,What an interesting post. I have a cardiologist who's a specialist in Tucson that tells me I have POTS, and a neurological specialist at Mayo that tells me the 'newer' guidelines for POTS makes it an ineligible diagnoses for me since my BP only drops when I stand. TTT and testing at home, I'm usually around 95-100/50 when lying down with a pulse of 60; standing my BP drop as low as 65-70/50, my pulse shoots up to 100-130. Supposedly, your BP should not lower by much when standing, but your heart rate should increase by at least 30 bpm. So I'm either labeled with "POTS" or severe orthostatic hypotension.Best of luck to you!Jana 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.