Mayo Clinic Doctor And Researcher, "perfusion Is Usually Maintained In Pots"

[jangle]

I corresponded with a Mayo Clinic doctor (who does a lot of research with dysautonomia conditions) via email about the lightheadedness associated with POTS and I got a reply that POTS patients usually maintain perfusion despite a tendency for some to have syncope. I don't really want to say the name as I'm not sure they'd want it published.

Now I really wish this was an issue that would be rigorously studied. Yes there are studies (which I don't have the time to find) that measured cerebral blood flow in POTS patients supine and tilted and found that they had the same levels as control patients, but then there has been some conflicting studies as well.

I didn't ask what evidence she has to suggest that perfusion is maintained in POTS patients, but I assume she might have more access to fMRI results and/or SPECT results.

In any event, seeing as to how lightheadedness and reduced concentration are some of the major problems for POTS patients, it seems like using SPECT or some type of blood flow imaging modality would be integral to understanding what is going on.

[Guest Alex]

Jangle, I believe the article below is one of those studies on the cerebral blood flow in POTS patients at rest and during HUT.

www.europace.oxfordjournals.org/content/7/5/460.full

I hope i got the link right - for some reason my copy paste feature doesn't always work.

Alex

[sue1234]

I had one TTT where the physician was actually the one running it. He attached something on my head that was supposed to measure blood flow(I don't know exactly what it was). In the final report, there was nothing on it that even made a reference to blood flow in the head. I kind of got the impression it was all kind of like a trial he was doing on this, which might explain why it was not on the report. I wish I would have asked about it, but like most can understand, I was not thinking correctly after 40 minutes of pooling blood and my heart beating out of my chest!

But, yes, I agree that it is something that needs to be studied. If there was a way, I think they could even look at the whole circulatory system when standing and see if anything is being blocked anywhere(head to hip). With the recent post by Yogini about blocked veins in the legs when standing(causing leakiness), they are going to look at the veins in the pelvic area. I wonder if standing might cause flow from the trunk and legs to be hindered, ultimately causing stasis in the legs and reduced blood for circulation.

[Kellysavedbygrace]

Rich, did this doc say there was no variation in cerebral perfusion between POTS and normal studies? According to the Director of Syncope and Autonomic Dysfunction Clinic at Cleveland Clinic a vital level of cerebral perfusion is maintained but it is thought to be a varying level of hypo perfusion. Earlier this year they were studying this very thing in POTS pts vs. Normal pts via special MRI and although I have not seen the results published it sounded as if they had a fairly compelling case for some degree of cerebral hypo perfusion.

Again I haven't seen published evidence but nonetheless it sounds like Mayo and CC are communicating different messages.

[HopeSprings]

You've probably seen these, but just in case - Dr. Stewart studied this with transcranial doppler. First results showed yes, but another similar study with CFS/POTS people showed no. I think a do-over is needed. I can't imagine what else could cause the lightheaded feeling since laying down helps to relieve it.

http://www.ncbi.nlm.nih.gov/pubmed/19502561

http://www.ncbi.nlm.nih.gov/pubmed/21919887

[Jacquie802]

I believe my cardio who did my First TTT 9 years ago did say there was decreased blood flow toy brain during the TTT.

[Dizzysillyak]

Interesting thread. Thanks.

So, instead of hypoperfusion in the brain, could it be that a brain chemical that gets altered that forces us to get light headed so we will lay down ? Something along the lines of whatever triggers our gag or cough reflexes ? There's

a med that stops the cough reflex but I can't remember what it is.

Is it possible this chemical is activated at the first sign of oi so we don't get hypoperfusion in our

brains ? But we will get hypoperfusion in other upper organs that are less sensitive to blood loss ?

Could this same chemical cause our other upper organs to partially shut down due to blood loss or lack

of circulating blood so they avoid damage ?

I vaguely remember a study a few years ago on this in ny where the patients doing the ttt

had emg wires inserted in their muscles to detect muscle "weakness" / function ? There were pictures

of the study.

Tc .. D

[yogini]

I know POTS patients are less likely to faint than NCS patients. Could this be what they mean by perfusion being maintained?

[Mytwogirlsrox]

Yogini that's interesting, so I wonder about peeps with NCS and POTS. I was diagnosed with both

[POTLUCK]

Naomi- so it appears in the first study that patients CBFV with POTS decreased more than normal people on tilt. Yet in the second study, even though POTS patients had more cognitve difficulties standing than normal, this time patients CBFV was no different in POTS patients when they stood. It seems like different results and I agreee with another study being needed, unless I am missing something else. The first study was POTS patients and the second was CFS/POTS patinents.