Hi Sylvie,
There is an exercise training program by Dr Leviene from Dallas that might be helpful for POTS.
http://www.sciencedirect.com/science...66070214002021
You can read about it in this blog -
http://potsgrrl.blogspot.co.il/2011/...-protocol.html
There is a lot of information about tests and treatments for POTS in that blog.

According to what you wrote here and on previous posts, if your blood pressure is falling when standing, I am not sure the diagnosis is POTS, as far as I know it seems NMH/OH.

Just a quick note about POTS and NMH/OH: POTS can present by itself. But patients that have NMH/OH almost always have POTS as a secondary Dx...because of the very thing I discussed earlier in this thread. When the BP drops upon standing, the body naturally and automatically increases heart rate (to tachycardic levels) to compensate for the low BP to get blood to the brain quickly. So, they end up with POTS secondary to the NMH/OH...because both conditions are a result of postural/orthostatic changes. I hope this makes sense.

Hi David,


Here are some contacts for you: please look up full addresses, for I don't have them ..sorry.

The two I contacted:

Lawrence Afrin
University of Minnesota -Hematology
Afrinl@umm.edu
His assistant is Georgio Walberg
612-625-9604

I wrote Afrin and Walberg wrote me back--stated Afrin read my letter...nice.

Cem Akin
Brigham and Women's Hospital, Boston
617-278-0300
(I called and assistant returned call)

Other docs:

Maria C. Castells
Brigham and Womens
Colleague of Akin

Theoharis Theoharides
Also writes with the two above
716-636-6898

And by the way, you know the Afrin article you posted up is on Mastocytosis, a far more serious disorder than MCAS?...I just skimmed it, but will check out page 149. You know you inspired my post...I really hope MCAS is the answer for you. I also had to smile at your sense of ageism (although I get it...how can a big, healthy man complain about obscure, subjective symptoms? ) Yet it ain't easy being a 60-year-old woman who flings around medical jargon. (I'm still working on my patient persona.) I'm so lucky I found a couple of smart, open doctors. My cardiologist is a peach. Yet, I'm still hunting for the elusive smart and empathetic neurologist!

En Bloc,

Speaking of smart....I again have to thank you. Is your neuro/rheumy Julius Birmbaum at Hopkins' Sjogrens center? My rheumatologist suggested I go there, and I know another patient of his from another forum (perhaps it's you....forum aliases are confounding!). My sister is in Baltimore, so it could be an easy stay for me. I'm eager to see if he'll test you ...perhaps I should see him?
.
...I look forward to your message (no rush!).

Sylvie

I have both....as noted by En Boc, they are interrelated. I've heard about the Leviene protocol, but have not read anything except patient experiences....thank you for these references!

I have POTS for many years and I have tried betablockers and fludrocortisone with high salt and liquid intake. A healthy nutrition helped me more than these treatents.
My doctor gave me the detailes of the Leviene protocol, if you want I can send you.

Florinef (Fludrocortisone) is to help increase BP by retaining fluids...as is the high salt diet. So I guess you had (at one point, at least) some drops in BP to warrant trying these. Are you not having any problems now with BP?

Were you ever Dx with NMH/OH?

I would love a copy of the protocol...thank you!

My baseline BP is very high...so Florinef and salt are out. DX is neurocardiogenic syncope and POTS....you understand the relationship!

And yes, my BP is all over the place...even with three meds. Lots of tachycardia too.
As noted, this is why I feel so sick. I also think I'm now deconditioned...My muscles are a shadow of what they were just 18 months ago. But I am stronger in yoga, and my balance is good....

I'll know a lot more on Tuesday when I meet with the cardiologist.

Thanks!

YES, my doctor is Julius Birnbaum. I have seen him for the last 8+ years (before he was even at the Sjogren's Clinic)? He is, by far, the best in the nation for neurological manifestations of Sjogren's (or other autoimmune disease). He is the only one in the entire country to be both a rheumy and neuro. If you can get in to see him, then by all means, go for it.

Have you been on the Sjogren's World forum? I have spoken of Dr. Birnbaum many times on that forum...and here. So you may know me from there...my user name there is my real name, Anita.

I sent you a private message