Mayo Clinic Connect
Would like to know the medications and other treatments that other patients have been given for cardiomyopathy with heart failure symptoms.
Hi, @archer — glad you found Mayo Clinic Connect. Welcome.
Here is some information from Mayo Clinic that may be helpful on cardiomyopathy: https://mayocl.in/2ncqDDM.
Is this a condition affecting you, or someone close to you? Is this a recent diagnosis?
Liked by Teresa, Volunteer Mentor
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This condition affects me. The diagnosis was made just over a year ago. For over 20 years, the diagnosis had been mitral valve prolapse. This new information came as something of a shock — especially after doing a small bit of research.
Liked by Teresa, Volunteer Mentor, Lisa Lucier, Connect Moderator
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?
Hi @archer. Glad to answer the call from Kanaaz to get involved in this discussion. Maybe my personal experience will be interesting to you. I've been in treatment for high blood pressure for 20 years, and in the last five of those years, finally have come to a level of stability and, hopefully, long life (beyond my nearly 83 years, optimistic enough that I try to set 20-year goals of activity when I get up in the morning).
As a result of that hypertension, I developed a type of cardiomyopathy that resulted in thickening of the walls of my heart's ventricles. Bear in mind what Kanaaz offered with the reference to the web site: there are four or five different types of cardiomyopathy; treatments for them — and medication for those treatments — will differ from one type to another. I hope you'll have the opportunity to visit that web site (as well as the Mayo Clinic site that Lisa cited) and read a bit about each of the types of cardiomyopathy and the kinds of medications that are used.
The other point I'd make (for starters) is: Don't become excessively fearful of hearing the term "heart failure." lt's usually not as threatening as it sounds, although it's a little like a wake-up call for a careful, deliberate plan to build a good and comfortable life by managing your condition and working with your medical team to do that successfully.
Like you, I was taken by surprise and prompted to learn about the problem from the alarm I felt when — after more than 15 years of hypertension treatment — a doctor of pharmacology dropped that term on me in a phone call. "What do you mean, heart failure?" I demanded. "Nobody has ever used that term with me before." He backed off and apologized, then pointed out that the term "heart failure" is commonly used in medicine for conditions that range from very serious down to "wake up, you need a management plan." As you'll note on Kanaaz's cited web site, you'll want to get more determined if the diagnosis comes back "congestive heart failure" — a condition in which the heart and circulatory system falls short in pulling fluids out of your lower extremities, resulting in edema or swollen tissues.
I notice it's been a year since your diagnosis of heart failure symptoms. Are you engaged in discussions with your medical team about whether to fix your heart valve or to get initial treatment to head off heart failure?
If memory serves, it was hypertrophic cardiomyopathy.
—At the time of the cardiomyopathy diagnosis, over a year ago, my internal medico did not mention heart failure. Nor did he mention it recently during my semi-annual check-up. But, by chance, we noted the record of my visit. It listed all of my past ailments, and it included the current, now referred to as congestive heart failure. Within minutes, my blood pressure skyrocketed. My symptoms — dizziness, slight pain/pressure in the chest, occasional breathlessness, weakness — all became worse. (By coincidence, that very week, my supply of co-q was depleted.) The past two weeks have been fairly miserable — from the symptoms and from the depression.. Have now resumed with the co-q 10, as well as my long-standing prescriptions of metoprolol and losartan, This has resulted in some slight improvement. —To return to symptoms, there has only been slight evidence of edema — very slight swelling of ankles, actually barely noticeable, but perhaps my medico detected some in his exam of the heart and lungs. Really wish he had said something. There would have been a serious Q and A about CHF. —Back to my original question: what meds have other patients been given?
Sorry to hear that anxiety caused a leap in blood pressure and related symptoms @archer. I hope my experience with "congestive heart failure" that was comparatively mild will help you get confidence that your own situation is similarly mild, as suggested by the slight edema. And I hope that you and your doctor can have that "serious Q and A" session to help out too.
Meds involved are different for different types of cardiomyopathy. The full range of meds was described this way in the treatment section of the heart.org posting on the illness:
"Many medications are used to treat cardiomyopathy. Your doctor may prescribe medicines to:
* Lower your blood pressure. ACE inhibitors, angiotensin II receptor blockers, beta blockers and calcium channel blockers are examples of medicines that lower blood pressure.
* Slow your heart rate. Beta blockers, calcium channel blockers, and digoxin are examples of medicines that slow the heart rate. Beta blockers and calcium channel blockers also are used to lower blood pressure.
* Keep your heart beating with a normal rhythm. These medicines, called antiarrhythmics, help prevent arrhythmias (irregular heartbeats).
* Balance electrolytes in your body. Electrolytes are minerals that help maintain fluid levels and the acid-base balance in your body.
* Electrolytes also help muscle and nerve tissues work properly. Medicines used to balance electrolytes include aldosterone blockers.
* Remove excess fluid and sodium from your body. Diuretics, or “water pills,” are an example of a medicine that helps remove excess fluid and sodium from the body.
* Prevent blood clots from forming. Anticoagulants (PDF), or “blood thinners,” help to prevents blood clots. Blood thinners often are used to prevent blood clots from forming in people who have dilated cardiomyopathy.
* Reduce inflammation. Medications used to reduce inflammation include corticosteroids."
In my case, the meds for hypertrophic cardiomyopathy include Lisinopril (ACE inhibitor, similar to Losartan), Carvedilol (beta blocker), Amiloride (diuretic), and Coumadin (anticoagulant for my a-fib). In the past, I have used Losartan (ARB blocker) and calcium channel blockers. Throughout I have had regular lab tests (usually quarterly) to check on electrolytes and acid-base balance rather than using any prescriptions for those purposes.
To Predictable: Sincere thanks for your patience and your detailed response. You seem to have do well via intelligent research and good doctors. In your case, what was the final diagnosis, and what was the treatment? —Just thought to mention that, for hypertension, we have had success by augmenting the Losartan with Hibiscus tea and, especially, Beet root.
CORRECTION: To Predictable: Sincere thanks for your patience and your detailed response. You seem to have done well via intelligent research and good doctors. In your case, what was the final diagnosis, and what was the treatment? —Just thought to mention that, for hypertension, we have had success by augmenting the Losartan with Hibiscus tea and, especially, Beet root.
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?
Liked by Kanaaz Pereira, Connect Moderator
—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.
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