Stiff heart syndrome

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New Member

Date Joined Apr 2013
Total Posts : 1
   Posted 4/8/2013 10:51 AM (GMT -6)   
My recent diagnosis is stiff heart syndrome. I am taking Bystolic, only tolerating 2.5 mg per day. My blood pressures are good with Bystolic, only sometimes raising too high ( 160/107) when exerting myself.

I'm looking to understand this disorder better, as there is little input from my Dr on how to manage this other than the medicine. I have always been a very active person and this is limiting my activity significantly (heavy pressure in chest in doing things I used to do routinely). I do get swelling in my stomach and ankles routinely. I am seriously limiting salt intake. Heat/humidity make me worse.

What is the prognosis for stiff heart (based on the echo they surmise
mine is from uncontrolled high blood pressure)... what activities are acceptable and what is usual management of this disorder?

I appreciate any and all information... and one more question is it always amyloidosis or is stiff heart not always about deposits in the heart? I do have two genes for hemochromatosis (father and brother had it), they test me once a year and so far it seems I do not have it. I am 72 years old, female. Thank you.

New Member

Date Joined Jan 2014
Total Posts : 1
   Posted 1/28/2014 12:01 AM (GMT -6)   
Hello, stiff heart syndrome is diastolic heart failure and most common in elderly woman or someone with high blood pressure which has not been treated. This is what my doctor told me I had a stiff heart rather than telling you these three words. I think they feel it will upset you why not plain English I do not know why? I hope you have figure it out by now but if not this should help you. My dad had congestive heart faluire from rehuomatic fever - bad values. So I do understand some of how to take care of myself. I also have a nurse who calls me from our insurance and advises me which is very helpful. She helps me understands the condition. HUGGY
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