nunntrio

Let us know how the Angiography goes. Who did you find to do this, if you do not mind sharing? I had a repeat venogram done in Dec.. They found some mild to moderate veins with reflux but the Dr. did not think there were bad enough to anything with yet. I am not sure how a MRI Peripheral Angiogram compares to a venogram.

Funny, funny!! We sooo know what is NOT causing our POTS!! Still looking for that elusive cause.... LOL Nunntrio and sue, That's how I felt when I got my ang II levels, and countless other tests.... After my last appointment, I told them out of frustration that I was done until the researchers go back to the drawing board and come up with some new ideas. I think I'm just as likely to find what works for me. No more medication experimentation for now. I think I am getting to that point myself. I am starting to feel like a human guinea pig and it is draining. We will see.

Vandy just emailed my results. My Ang II was 32.1 and Ang (1-7) was 10.6. My Ang II level was very close to the control values. Bummer...yet another thing that is NOT causing my POTS.

TXPOTS - If your DH find a copy of this study please let me know. I just emailed Vandy to request my results. I wish they had been proactive enough to have let me know this information as well. Sue - Yes peeing lying down(not easy). I guess these hormone levels can be detected in urine and can are effected by posture. I will let you know if I find anything form Vandy. I emailed them and they are pretty good about replying. As to wether Vanderbilt helped I can say they tried(I knew going in there was no majic pill). They recommended first a beta blocker then a beta blocker in combo. with Midrodine(they said Florinef would not help because I have normal blood volumn). Unfortunately I was not able to tolerate either. I did not leave there really feeling any better phyically but I did benefit in some ways. First, I got a definite diagnosis of POTS which having a firm diagnosis was a huge relief. Secondly having it from Vanderbilt made it hold a lot of weight with my local Doctors. They were also able to rule out certian causes (low blood volumn for one, now possibly angiotension)which was helpful.They also recommended to my local to have a Qsart to rule our small fiber neuropathy (which also came back normal). If you would like any further infor. I can PM you.

Thanks for posting this study. I think this must be the angiotensin study I took part in last year. They would not give me my test results but, I will contact them now and request them since the study had been published. Do you know how we get the full text version of the report? I can say that I was on a very controlled salt diet for the test and it was one of the most miserable tests I have ever had done. It involved having an IV in each arm and having to pee in a bed pan while laying down. YUCK!!! I know they actually paid me $200 to do one test while I was there and I think this is the one.

Please let us know what you find out about this, I am very interested. You are lucky to have a Dr. that is willing to do this for you.

I believe the 90's is the very bottom end of normal for blood pressure but like you I can not help but think that it must be a least a contributing factor. It seems to me that blood pressure in the 80's is definitely to low but that is nothing more then my speculation. I agree that Dr.'s are stuck on the blood volumn expanding agents (salt,florinef) the next thing they go to is beta blockers. While beta blockers do lower heart rate they also lower blood pressure which does not work for people like us. Have you ever tried Midrodine or possible Midrodine in combonation with a beta blocker? That was the combination Vandy tried on me. Unfortunately I am siverely sensitive to all med.'s and could not tolerate this combo. but it maybe worth trying.

I have a lot of the same symptoms, what I call brain fog (I know I have posted to you about this before) and my blood pressure also runs very low. My resting blood pressure runs around 93/63 and at times I have wondered the same thing. However, I have alway had very low blood pressure and have only been sick with POTS for about 4 years. I have never really tracked my blood pressure in relation to my symptoms except every time I try a beta blocker. The last time I tried a beta blocker I felt like I could not stay conscious even lying down. I was feeling like death. I checked my blood pressure and it was 80/40. I have always felt that my symptoms have mostly come from my brain not getting enough blood. I am not sure if this is solely from low blood pressure it seems at least for me there must be an additional contributing mechanism. I had a total blood volumn test done at Vandy and it came back normal. They told me because of that Florinef would not really help me. I have tried the salt /water thing and it does nothing to help. Unfortunately I have only been able to rule out what is not causing my symptoms and not what is causing them? I think I would give up everything except my family to get the answer to that question.

I am about 3 1/2 hours from Dr. Suleman in Dallas. Someone on this board told be that they had a TTT with doppler done by him. I am not sure if he would do it for me, I have spoken to him and he is willing to take me on as a patient. I have not made the decision to go up there yet (long story) but I am still considering the option. Are you anywhere near Dallas? I believe Vanderbilt has done this test as well. Even if the test shows what I suspect is hpyoperfusion I am not sure there is much more they could do for me. It would give me some piece of mind having a test that actually show what is happening. For me laying down by far helps the most. I hate that my kids see me lying down so much. I have gotten some relief with compression hose but they are by no means a cure all. I sometimes wonder if I will get some sort of damage to my brain because it is not getting enough blood so often. I guess only time will tell.

Thanks for the reply. I have tried gluten free with really no change. I have not tried asprin I might give that a shot. Thanks

Thanks for the the reply. Yes my brain fog gets significantly better after I lay down for a while. I also believe my problems almost all stem from a blood flow to the head problems. There is a Dr. in Dallas that does a trans cranial doppler during a TTT. I would really like to do it to get some validation to what I suspect to be my root problem, I am considering going up to see him. That is really to bad they lost you results. Have you found anything that helps?

I have tried it but I unfortunately do not tolerate it. I wish I could take it.

My worst symptom by far is brain fog. This fog is alway worse in the morning and somewhat improves as the day goes on if I stay off my feet. Here is the weird part. I can always tell when this fog is going to clear out because I get intense Pressure the runs up the back of my head and neck(this only happens after I have been off my feet for an extended period). It is almost like I can feel blood pressure being restored to my head. After I get this sensation which only lasts a few minutes I get a great improvement in my "fog". This happens to me daily. My husband can always tell when I have had one of these episodes because afterwards my normally very pale face actually gets some color it. I have mentioned it to several Dr.'s and none of them have ever commented on it. Is this common in POTS? Has anyone else experienced pressure in their head followed by releif of symptoms? Right now I am wondering is this just another POTS symptom or is could this be a clue the an underlying cause. Any input would be greatly appreciated. Just to give you a little background, I have been seeing a vasular surgeon for PCS and varicose vein issues. He said these issues are only minimally contributing to my POTS. He does believe most of my symptoms can be attributed to a circulatory problem but has no ideas beyond that. This brain fog is so debilitating and I really have no idea where else to turn to get help.

Thanks for posting your experience let us know what happens. From what I understand a 70 bpm to 110 bpm is signigicant in itself but I could be wrong. Let us know what the Dr.'s come up with.

I wish I could give you some input but I have no experience with this. It is interesting so please keep us posted. Let us know what your neuro. thinks.

The posture study was very close to a poor mans tilt. They take you bp/hr first thing in the AM before you get out of bed they they take it after sitting up for a few minutes then they have you stand up and take it in 1,3,5,10,15,20....minute intervals. They strictly controlled my diet for 24 hour before and took a lot of blood during the test. If you read the below article it briefly explain a TTT verses testing in which someone is required to support their own weight. That section is about half way down the page. http://hopealways.wordpress.com/2010/06/12/must-read-for-all-p-o-t-s-patients-and-their-doctors/

At Vanderbilt they did not use a TTT to diagnosis me. The use a posture study. One of the Dr.'s there wrote an article saying he felt this was a better way to diagnos because during a TTT you are not required to support your own weight. Thus it does not as replicate as closely what happens in real life. There is some vasomotor thing (sorry I am in a hurry and don't know the real term off hand) that is not being tested if you are not required to support your own weight. If I searched I could find the article. I believe it was written by Dr. Raj. The only problem with the posture study as a diagostic tool is that it is not reconognized by many other Dr.'s. When I show other Dr.'s my report from Vandy they always want to see the TTT results and they do not alway accept the posture study. Just an idea.

Your heart rates are very similar to mine. On postures studies and TTT my heart rate starts in low 60's and upon standing/tilting it is in the 110-120 range. (every now and then the low 120's). I also feel awful. There is a theroy out there that if your heart rate does not go above 120 you do not qualify as POTS. I believe the Mayo Doctors follow this rule (Someone can correct me if I am wrong on this). However the Vanderbilt Dr.'s, where I went for testing, follow the rule that if your heart rate gots up by over 30 bpm on a posture study you meet the criteria for a POTS diagnosis. You are still showing a 45bpm jump which is substantial. It looks like your figures fall in the middle of this controversy.

I do not mind at all sharing this. I have been helped a lot by others sharing their stories on this board. Anyway, I just posted a thread about having a venogram done that explains it. Let me know if you can not find the thread.

Just wanted to update on some interesting Dr. visits. I have previously been treated for PCS (Pelvic congstion syndrome) and figured that since it was treated it could not be causing my POTS anymore. A few weeks ago there was a discussion by POTSDAD about PCS that made me decide to look ino wether my symptoms can be attributed to continued problems with PCS. Anyway, I wound up in a vascular surgeons office. He looked at my origional pelvic MRI's and said my veins were "impressive". I am having a venogram next week because I have so much metal in my pelvis an MRI will not work anymore. I am afraid to even begin to get my hopes us that we may have finally found the cause of this. This Dr. actually told me that his goal was to make it so that I do not have this foggy I'm going to pass out feeling anymore and to increase my exercise tolerance. I have already been through so muh with this condition that I know better then to get my hopes up but we will see. I just thought I would share. As a side note I also have a small PFO that they may now consider closing because I guess my veins will put me at increased risk for problems. He is going to confer with my cardiologist on this one. I am a little concerned about that as well.

I know there are a few people on this site that have seen him. I have not but I have talked to him. I sent him my records to see if he could help. He personally called me back and talked to me for a good 20 minutes(that is longer then most spend with me face to face). He sounded like he has a strong interest in helping people with this. He is in Dallas and he was a little concerned about treating me since I am a few hours away. He said he would since I have an internist who is local in case I have a bad reaction to the meds. I have not seen him yet because I am having some testing done on my veins locally. If these vein tests do not pan out I am seriously considering going to see him. He did say they could pretty much get me in whenever I could make it. So you at least do not have to make an appointment a year in advance. Wish I could help more

Thanks for posting this. It was a great article.

Sue are you going to an autonomic specialist in Houston. I know what you mean when you want a Dr. that is willing the think it through. If you find some in the Houston area that is helpful would you mind passing that information along. I am going to see a vascular Dr. at Baylor next week but I do not know what to expect.

I have been treated for Pelvic Congestion Syndrome (PCS) but think I am still having problem that way that might be contributing to my Pots. They surgery notes from my vein embolzation read, Left Renal and ovarian venography, subselective catherization and embolization of ovarian vein varices and secondary refluxing left renal vein embolized just below the left renal vein. Anyway, I am still having pelvic pain and want to look into it. I can no longer go to the Dr. that did this surgery because be passed away (sad story). My cardiologist referred me to a vascular Dr. However in the past I have always heard to go to an Interventional Radioligist. Is there a difference between these types of Dr.'s? If so which type of Dr. do you think I should see? My cardiologist is not a POTS expert but seemed will to try to help. Thanks>

Were the tests you had done for this done lying down or standing up. Most CT's and MRI's are done lying down in which case the blockage may not show up as well. The internentional Radioligist I went to said these test can not be relied upon for PCS for this reason. I think it is very hard if not impossible to find a vertical MRI. I guess that is why they use Venograms. Anyway just an idea.