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.

I was in Pub Med and found this latest research paper from the usual researchers out of Vandy. I read it, but don't quite understand it. I really know nothing about angiotensin I or II. I do, however, know that I have had a low aldosterone. Can anyone understand this enough to make a guess if this is something fixable? Can someone's "angiotensin II" be measured? Is it low because of our orthostatic physiology OR is it low for no reason, and fixing it could help the POTS? I hope it is fixable!

http://www.ncbi.nlm.nih.gov/pubmed/21266211

By the way, my cardiologist needs this article slipped onto his desk. I think he hasn't seen this one yet...or, hasn't taken the time to read it!

http://www.ncbi.nlm.nih.gov/pubmed/21087570

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.

Dr. is writing a script for a PET scan of the brain. I have had severe cognitive impairment suspected of poor blood flow or a metabolic problem (worse then brain fog. Does anyone know the specifics, like does this show how much blood flow you are getting to your brain? Does it show how poorly or well you are thinking?

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.

Nunntrio- I had the blood volume test done too and it came back normal. Looking back at medical records I also have always had low blood pressure -- long before having POTS. At the same time, it can't be "normal" to have BP in the 80's or 90's, can it? So maybe there is a relationship --just not sure what it is. The Florinef/Salt/Water recommendation seems to be the first line of treatment recommended by Doctors. They seem to be STUCK on this even when (like in our case) it doesn't really seem to apply. I just keep reading about salt, water, florinef, (ad nauseum)and think why even bother. I think we need blood to move UP (our brains) not out (expanding every blood vessel).

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.

Just wondering for those with low BP, do you feel noticeably worse when your blood pressure is low? My worst symptom is dizziness/brain fog/drunk feelings, but I can't correlate it to low blood pressure. My blood pressure ranges anywhere from 80/40 to 109/76 (highest reading out of 25). There are times I am so spacey and dizzy and think it HAS to be my blood pressure, then I'll check and it's my high normal. I just don't get... is the dizziness in POTS supposed to be due to low BP? And if BP isn't the thing causing the symptoms, then what would be the point of taking medication or doing things (salt/water)that raise it? I may be horribly misinformed. Thanks.

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.

"There is a Dr. in Dallas that does a trans cranial doppler during a TTT. "

Are you near Dallas? Can you get the test done? This is the test I would like. I'll have to research and see if it's available somewhere in my area. I really have found nothing that helps besides laying down and my morning dose of coffee. If only there were a way to push the blood UP.

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.

I have had a lot of trouble with brain fog. Just recently I started low dose aspirin and it seems to be a bit better. I have also been trying to be more careful to avoid all gluten, so that might also be helping. I just thought I'd mention these as things you might be able to try.

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

Brain fog is my worst symptom too... along with feeling off balance and like I can't see straight. Do you find that laying down helps the brain fog?

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.

So I thought my TTT was tomorrow, but thank goodness I checked my calender this morning and it was today.

I was on the table for about an hour before the doctor walking in the room to start the test. My heart rate was around the 70 mark. When he walked in the heart rate jumped to low 90. When they stood me up my heart rate was around 110 mark, and it stayed that way for 18 min. all of the sudden just as I was think "oh well I guess Im all right" my pulse jumped to 158 beats at the 19 min mark. I felt terrible. My legs felt weak, my head was starting to hurt, my vision felt hazy. They laid me down right after that and my pulse came down to 70 beats really quickly. So I only made it about 20 min out of the 45 min. they told me I would have to stand there.

After the test the doctor said he is glad we did the test, but he wasn't exactly sure it was POTS since it took longer then 10 min. for the spike to occur. Doctor said he would call me after he called a few other doctors. Any one have a similar experience please let me know. I thought right after this test I would have a diagnosis but once again I am left to wonder until the next phone call. So frustrating.

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.

I just turned twenty two and recently went to mayo for a check up. I saw the pediatrician who diagnosed me over five years ago. He says that I'm overweight and the only thing I should try for now is to work out, healthy diet, and to stay motivated. I did a tilt table test and my heart rate went from about 65 - 110. I was wondering how high does other people"s heart rate get? I still feel crappy all the time when i stand but he says I'm getting better. What do you all think?

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.

nunntrio-can I be nosy and ask what you are having your veins checked for?? That's okay if you don't want to share!

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'm moving to TX next year & would like to see Dr Suleman. Can anyone give me info about him?

How hard is he to get into?

Will he take someone who has already been diagnosed?

Is he will to work with you & not just boss you around?

I'd love to hear anything you can tell me about him!

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

Hi all... I'm going to try and copy and paste this really cool article on small fiber neuropathy and POTS & orthostatic intolerance by Dr. Goodman. https://docs.google.com/fileview?id=0BwCG-SGqEWUrZGFkMGQ0ODYtYjlmOS00ODZiLTkyYjYtODUxYmU1ODExOWVl&hl=en

Thanks for posting this. It was a great article.

TXPOTS--I am in a new round of testing with a new cardio, neuro and endo. I went to Houston to have new doctors get "fresh" look at my situation. I will be going back and forth for various testing for the next 3 weeks or so. I got a good feeling, like the new doctors were really going to think it through, which is ALL I have ever expected from any doctor. Unfortunately, up until now, I had never found any that would "think" of the various possibilities.

We do seem to have a similar course. Please keep me updated on what you are going through and finding out.

And Lenna, sorry I got off topic!

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>

Sue:

The radiologist said it wasn't enough to qualify as Nutcracker Syndrome and the vascular Dr. thought nothing of it either. Do you really think I should pursue this further?

Naomi, you need to pursue this with someone else!! If your testing showed that you actually had compression of the left renal vein, then you HAVE Nutcracker Syndrome, from everything I've read.

Ana22, I have read that ultrasound of the left renal vein can be used, but the better way to see is CT scan/MRI, and the best is a venogram.

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.