FAQ/Help |
Calendar |
Search |
Today's Posts |
02-06-2016, 02:00 AM | #11 | ||
|
|||
Member
|
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. |
||
Reply With Quote |
"Thanks for this!" says: | SylvieM (02-06-2016) |
02-06-2016, 08:35 AM | #12 | |||
|
||||
Senior Member
|
Quote:
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. |
|||
Reply With Quote |
"Thanks for this!" says: | northerngal (03-01-2016), SylvieM (02-06-2016) |
02-06-2016, 12:03 PM | #13 | ||
|
|||
Member
|
Quote:
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 |
||
Reply With Quote |
"Thanks for this!" says: | DavidHC (02-07-2016) |
02-06-2016, 02:27 PM | #14 | ||
|
|||
Member
|
Quote:
|
||
Reply With Quote |
02-06-2016, 05:44 PM | #15 | ||
|
|||
Member
|
Quote:
My doctor gave me the detailes of the Leviene protocol, if you want I can send you. |
||
Reply With Quote |
02-06-2016, 06:19 PM | #16 | |||
|
||||
Senior Member
|
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? |
|||
Reply With Quote |
02-06-2016, 10:18 PM | #17 | ||
|
|||
Member
|
I would love a copy of the protocol...thank you!
|
||
Reply With Quote |
02-06-2016, 10:29 PM | #18 | ||
|
|||
Member
|
Quote:
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! |
||
Reply With Quote |
02-06-2016, 11:29 PM | #19 | |||
|
||||
Senior Member
|
Quote:
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. |
|||
Reply With Quote |
02-07-2016, 02:09 AM | #20 | ||
|
|||
Member
|
|
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
palmitoylethanolamide : a mast cell stabilizer | Peripheral Neuropathy |