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Old 02-06-2016, 02:00 AM #11
stillHoping stillHoping is offline
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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.
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Old 02-06-2016, 08:35 AM #12
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Quote:
Originally Posted by stillHoping View Post
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.
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Old 02-06-2016, 12:03 PM #13
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Quote:
Originally Posted by DavidHC View Post
I posted a number of things on this thread after Silvie mentioning MCAS. I did lots of research, basically reading all the literature I could find, including the short piece Kiwi provides here.

As I said on there, lots of useful links here (this woman is both an MD and has Celiac+MCAS): http://www.thepatientceliac.com/2014...drome-madness/

Including to this long piece bu Dr. Afrin, which is worth reading:

https://www.novapublishers.com/catal...ducts_id=42603


Sylvie,

Where did you call or write to? I would like to get my GP involved and see if Dr. Afrin is willing to work with her. I have no problem seeing the plausibility of this in my case too.



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
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Old 02-06-2016, 02:27 PM #14
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Quote:
Originally Posted by stillHoping View Post
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.
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!
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Old 02-06-2016, 05:44 PM #15
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Originally Posted by SylvieM View Post
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.
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Old 02-06-2016, 06:19 PM #16
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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?
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Old 02-06-2016, 10:18 PM #17
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Quote:
Originally Posted by stillHoping View Post
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.
I would love a copy of the protocol...thank you!
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Old 02-06-2016, 10:29 PM #18
SylvieM SylvieM is offline
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Originally Posted by en bloc View Post
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?
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!
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Old 02-06-2016, 11:29 PM #19
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Quote:
Originally Posted by SylvieM View Post
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
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.
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Old 02-07-2016, 02:09 AM #20
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I would love a copy of the protocol...thank you!
I sent you a private message
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