Would like to know the medications and other treatments that other patients have been given for cardiomyopathy with heart failure symptoms.
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I can only imagine how worried you must be! I'm tagging Mentors @predictable and @hopeful33250 as well as fellow members @hazel516 @badboys1965 to see if they may be able to share more information. According to The American Heart Association, the main types of cardiomyopathy are:
-Arrhythmogenic right ventricular
Has you been diagnosed with any of the above types, @archer?
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You're welcome @archer. In my case, there hasn't been a final diagnosis, if that means cured. I've been able to manage my symptoms and keep them under control with my medications, diet, and exercise. The only treatment with cardiomyopathy in mind has been for hypertension, its original cause (we think). My medication is listed near the bottom of my detailed message just above.
Interesting to hear of your use of Hibiscus tea. I have it with dinner every night. I have heard of the benefits of beet root, but haven't used it yet since my blood pressure is behaving (except when my white-coat syndrome acts up at the doctors offices).
—Thanks for detailing the meds. (Really sorry; had not seen that lower part of the message.) It is reassuring that meds similar to my own have been so effective for you. Of course, sort of wondering why no diuretics were prescribed for me.
—In my case, hypertension has also been suggested as the probable cause of my condition. What are the symptoms that you were able to control? Apologies for the question bombardment. As you might imagine, my hope is to discover if my ailment can actually be contained and if my situation might eventually be as fortunate as your own. Again thanks.
My husband has restrictive cardiomyopathy due to amyloidosis. He only takes diuretics currently.
I have been reading the dialog between you and @predictable and I am glad that you have been learning so much from his experience and sharing of information.
I agree that the diagnosis of heart failure can be a frightening one. I knew I had heart valve problems since age 11, from Rheumatic Heart Disease, however, I got along OK for many years with only a few problems associated with physical exertion (such as during childbirth).
Now, however, I do have more of a problem with the aortic valve, with diagnoses of aortic insufficiency and diastolic dysfunction (a mild form of heart failure). My meds are an ACE Inhibitor and a Beta Blocker. These work quite well for me.
Has any doctor ever suggested a repair or replacement of the mitral valve?
—Thanks for your comments. So far, no mention of mitral valve repair or replacement. My current meds a metoprolol (beta blocker), Losartan (an ARB), and several supplements, including the CoQ-10. These have done well for the past few years. But now, the symptoms have exacerbated somewhat — which is why my posting here began. Again, thanks. —Archer.
@archer, my "controllable symptoms" were mainly hypertension and hypokalemia (too much blood pressure and too little potassium). In both cases, an inherited variant in my kidneys was the cause, and my medication made both problems manageable. I have had no symptoms from my cardiomyopathy, which was discovered by a routine ultrasound of my heart. As to diuretics, they are the automatic first medication response to hypertension, so I got started on them. In your case, your slight edema in your extremities suggests that diuretics are less needed. I need them to deal with my sodium-potassium balance. Otherwise, I'd rather do without and take care of sodium by foregoing salty foods. I think you may be on the route to stability; one way to test that is to jot down a list of questions that you want answers to and put them to your doctor in a discussion aimed at formulating a long-term treatment strategy.
Martin, Sincere thanks.
Hi folks I am a 50yr old woman diagnosed last year with dilated cardiomyopathy. At my most recent cardio appt last week the Dr was very pleased with my progress but I am not healed up yet. Two things: my family is fully freaked out by my diagnosis and not able to be supportive. So I am looking for support and support groups because i know loneliness/lack of support is bad for you. Also, even tho the doc says im getting better I still feel crappy mostly from side effects of my meds (carvedilol, entresto and spirolactinone). My blood pressure is normally low and with the meds is even lower. Yesterday, I tried to do a mile walk, which in the past was totally easy for me, but this time I got a pain in my jaw which spread to me head which I have never had before so now Im scared. Tests earlier this year show I have no disease in my arteries so the cardiomyopathy is probably an inherited condition. I am otherwise healthy. I would love some support and any thoughts which may be helpful.
HEY! You say "your not healed up yet:" So your pleased doc is saying you ARE getting better! Sounds encouraging to me! Some folks are a lot worse off than us. I just went thru a "why bother" couple of bad days when told a week after airtic valve replacement, that was going well, I have to begin taking blood thinners due to my new A-fib bouts that are occurring pretty much 75% of the time now. I so enjoy my beer! And all this crap appears to mean no more. Very depressing to see my "health" going to hell in a hand basket in just days.
So I try to learn more and more about all this stuff everyday – that helps. I too came here and posted and have received some wonderful replies of support – so I am glad you came! Hope you get other's stories that help you feel better about your own situation, as well as some good info you may not have thought of yet.
Good luck! Your doc is encouraged, hope you can be soon too!
@tahoetaylor All of us sit in a pile of dog poop some time. I don't have what you have (I think) but if you are looking for something to read, my story is at httjps://bit.Ly/1w7j4j8 'Amyloid and Old Karl' . You might find something to laugh about, I suppose. Anyway, hang in there, and keep pushing back at the medicos.
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