Hi @michelep1964. I just happened to be here when you dropped in a few minutes ago. I had just looked in for information on cardiomyopathy myself and found your note. So here's where I found a lot of information: http://mayocl.in/1wmRKea.
Most interesting to me is that I'm being treated with most of the therapies mentioned in this article -- not because I have a lot of symptoms. I have a mild atrial fibrillation, and an echocardiogram a few years ago noticed some heart enlargement. I also am hypertensive. So I have been on Lisinopril and since then, Coumadin for the last three years, and Carvedilol (a beta blocker) for the same period. I have mild edema, but its from my kidneys (I think) rather than my heart. So a diuretic is a daily med. My energy level is fine, although my breath is starting to weaken (problem for me, a singer). Generally feel pretty good from day to day. Get moderate exercise regularly, which helps. A little overweight (10 pounds or so).
Most of the time, a distinct cause of cardiomyopathy is hard to find. It seems to be an accumulation of factors that eventually result in declining blood volumes around the organs (and the brain!). My best advice is to seriously plan and build a good medical team whose members will talk openly with you and show a genuine interest in alleviating any troubling symptoms. I'm lucky. My HMO helped me build my team, and we're doing fine: I see them or email them when I need to, and they respond with concern and care for me as a patient.
Do you have a medical team? What kind of doctors and specialists?
Furosemide (Lasix) belongs to a group of medicines called diuretics (also known as water pills). Furosemide is given to help treat fluid retention (edema) and swelling that is caused by congestive heart failure, liver disease, kidney disease, to treat high blood pressure (hypertension). It works by acting on the kidneys to increase the flow of urine. https://www.mayoclinic.org/drugs-supplements/furosemide-oral-route/description/drg-20071281
I'm tagging Mentor @cynaburst, as she has experience with cardiomyopathy and may be able to share her thoughts about the sweating that you and @jillybeans22 have mentioned.
@clink54, have you taken your concerns to a cardiologist? Do you feel that the sweating is excessive or all over your body?
I was just diagnosed with this also. I had valve replacement in 2014 and believe this led to me getting dialated cardiomyopathy. My dr. Has me on medications to help with it. So far, I’ve seen a positive difference in my pulse and how I feel. I didn’t realize I had symptoms until I started medication...I noticed I felt better. I am pleased with my cardiologist and am following his advice. I ask a lot of questions to help me understand. That’s the best I can offer right now. I’m currently waiting for another Electro cardiogram to be done to see if I have improved...
@camaroyo - glad you are pleased with your cardiologist and you've seen a positive difference so far with your medication. You mentioned following your doctor's advice. Beyond the medication prescribed, wondered if he or she had any self-care or lifestyle advice you could share? What medication are you currently taking?
@monamampm - were there any specific aspects of how to handle your diagnosis you had questions about?
Hi, sorry..this went to junk mail & just saw it. I was just diagnosed in Aug with this. I had heart valve replacement in 2014 and believe the dialated cardiomyopathy is probably a result of that. Plus I had to get a pacemaker cause atrial fibrillation meds caused my heart rate to drop to 30 and below. The meds I was put on for the cardiomyopathy are Carvedilol (25mg) (Coreg) & lisinipril (10mg). Just increased to 25 mg about a week ago. I’m due for an echo in Jan to see if there is an improvement in my EF rate. But I also take sotalol AF, coumadin (warfarin) & metformin. The sotalol AF & coumadin are for when I had atrial fibrillation (which I haven’t had since surgery). I have low numbers (meaning not way about the limit) too on diabetes and watch that. The lifestyle has not changed for me fortunately as I don’t have significant symptoms that I am aware of. But best lifestyle is to exercise... walking is my best right now. Have foot problems and surgery in a couple days on my right foot, but will start walking again ASAP. I eat pretty clean, no fried foods, not much red meat at all, drink water daily, don’t eat a lot of sugar, but I love sweets so have moments. But I do have a hard time losing weight now. I could stand to lose some...as time goes on and if I see issues with this, I may have questions.
Hello, I am new to the Mayo Clinic Connect -I was born with MVP and didn't have any major problems until I had Robotic Mitral Valve Repair in 2017, which was due to bileaflet prolapse and severe regurgitation. My EF was at 32 in January the following year. I had an MRI that showed no signs of having a heart attack. I went through cardiac rehab from January through April and was feeling stronger. I did however have Tachycardia that started around January 2018, which I started taking Corlanor 2.5 mg twice a day. I had to decrease to once a day due to presyncopal symptions. I took this for a year and continued excercising. In May of 2018 my EF was 55%, which stayed at that % until an Echo that I had in April 2019. My EF is now 40% and showing signs of mitral regurgitation which there was none post surgery. I also was diagnosed with hyperlipidemia with an LDL of 198 and started Crestor. I have nonischemic cardiomyopathy and grade 1 diastolic dysfunction. I started taking Ramipril 2.5 mg once a day and Carvedilol 3.125 mg twice a day. I started seeing a new Cardiologist in May and he wanted to check for blockages by doing a Cardiac Cath. I have no blockages. He had me stop taking the Corlanor. I am currently feeeling more tired and my heart rate is increasing during non strenuous activities like walking up a flight or two of stairs. My problem is since I had my surgery my BP has been low. I am now getting readings of 88/68 more frequently. I am concerned about taking higher doses of my medications because my BP is already low, but I am having more symptions and tire more easily. Does anyone know of any medications that will help my heart to recover that does not have an effect on blood pressure. I will have another ECHO done in November. Thank You
Do not be afraid of higher doses of medications that lower the blood pressure. Are bodies are amazing! If your meds are titrated slowly (very slowly), your body adjusts and the BP might stay stable. If your BP goes down, you go back to the lower doses and later try again.
Hello, I am new to the Mayo Clinic Connect -I was born with MVP and didn't have any major problems until I had Robotic Mitral Valve Repair in 2017, which was due to bileaflet prolapse and severe regurgitation. My EF was at 32 in January the following year. I had an MRI that showed no signs of having a heart attack. I went through cardiac rehab from January through April and was feeling stronger. I did however have Tachycardia that started around January 2018, which I started taking Corlanor 2.5 mg twice a day. I had to decrease to once a day due to presyncopal symptions. I took this for a year and continued excercising. In May of 2018 my EF was 55%, which stayed at that % until an Echo that I had in April 2019. My EF is now 40% and showing signs of mitral regurgitation which there was none post surgery. I also was diagnosed with hyperlipidemia with an LDL of 198 and started Crestor. I have nonischemic cardiomyopathy and grade 1 diastolic dysfunction. I started taking Ramipril 2.5 mg once a day and Carvedilol 3.125 mg twice a day. I started seeing a new Cardiologist in May and he wanted to check for blockages by doing a Cardiac Cath. I have no blockages. He had me stop taking the Corlanor. I am currently feeeling more tired and my heart rate is increasing during non strenuous activities like walking up a flight or two of stairs. My problem is since I had my surgery my BP has been low. I am now getting readings of 88/68 more frequently. I am concerned about taking higher doses of my medications because my BP is already low, but I am having more symptions and tire more easily. Does anyone know of any medications that will help my heart to recover that does not have an effect on blood pressure. I will have another ECHO done in November. Thank You
hello @sophieshor : your story has some matches with mine, quite similar, of course not 100 %.!!. Not to spite I can mention the treatment I got ,apart from other drugs, like beta-blocker . I described it in some posts / mayo connect, The cardiologist gave me Digitoxin, which is a very old medication, but now the cardiologists deal with this preparation again. I would recommend you to ask your cardiologist. I know that it ist available in the USA . maybe you can look it up in the medical literature, otherwise I can explain the effects of digitoxin on your heart. My heart improved definitely.
yoanne
Hello, I am new to the Mayo Clinic Connect -I was born with MVP and didn't have any major problems until I had Robotic Mitral Valve Repair in 2017, which was due to bileaflet prolapse and severe regurgitation. My EF was at 32 in January the following year. I had an MRI that showed no signs of having a heart attack. I went through cardiac rehab from January through April and was feeling stronger. I did however have Tachycardia that started around January 2018, which I started taking Corlanor 2.5 mg twice a day. I had to decrease to once a day due to presyncopal symptions. I took this for a year and continued excercising. In May of 2018 my EF was 55%, which stayed at that % until an Echo that I had in April 2019. My EF is now 40% and showing signs of mitral regurgitation which there was none post surgery. I also was diagnosed with hyperlipidemia with an LDL of 198 and started Crestor. I have nonischemic cardiomyopathy and grade 1 diastolic dysfunction. I started taking Ramipril 2.5 mg once a day and Carvedilol 3.125 mg twice a day. I started seeing a new Cardiologist in May and he wanted to check for blockages by doing a Cardiac Cath. I have no blockages. He had me stop taking the Corlanor. I am currently feeeling more tired and my heart rate is increasing during non strenuous activities like walking up a flight or two of stairs. My problem is since I had my surgery my BP has been low. I am now getting readings of 88/68 more frequently. I am concerned about taking higher doses of my medications because my BP is already low, but I am having more symptions and tire more easily. Does anyone know of any medications that will help my heart to recover that does not have an effect on blood pressure. I will have another ECHO done in November. Thank You
<p>While riding on the back of a motorcycle, I noticed my heart not feeling right, I thought it would go away, a few minutes later I became very dizzy and was close to passing out, I think I did for a few seconds, because next thing I noticed I was leaning with all my weight against my husband. He pulled off the road and I guess I came back but very disoriented, dizzy didn’t know where I was. I then started throwing up but still out of it. He was able to get me into a garden center, no air conditioning but out of the sun. I slowly started coming around after a few minutes I had a cold cloth for my face and drank some water. Temp was in the 80’s and we had only been riding for just over an hour. Went to the emergency room, got an IV and was released. They said my EKG show PVC’s I have dilated cardiomyopathy and take two medications. I think it was my heart that started it all, because that’s what I felt first. Has anyone had any problems like this before?</p>
Hi @madhatter, you may have noticed I moved your post to this discussion you had previously posted in so that all your posts would be in one place. Simply click VIEW & REPLY in your email notification to find your post.
That must have been a frightening experience. I'd like to introduce you to @yoanne and @sophieshor as they may be able to offer you support.
Back to you @madhatter, have you mentioned this episode to your cardiologist?
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Hello @clink54,
Welcome to Connect. Here's an in-depth article from the American Heart Association about dilated cardiomyopathy: http://circ.ahajournals.org/content/134/23/e579#sec-211
You may also be interested in this past discussion on the topic
– Dilated Cardiomyopathy https://connect.mayoclinic.org/discussion/dilated-cardiomyuopathy-meds/
Furosemide (Lasix) belongs to a group of medicines called diuretics (also known as water pills). Furosemide is given to help treat fluid retention (edema) and swelling that is caused by congestive heart failure, liver disease, kidney disease, to treat high blood pressure (hypertension). It works by acting on the kidneys to increase the flow of urine. https://www.mayoclinic.org/drugs-supplements/furosemide-oral-route/description/drg-20071281
I'm tagging Mentor @cynaburst, as she has experience with cardiomyopathy and may be able to share her thoughts about the sweating that you and @jillybeans22 have mentioned.
@clink54, have you taken your concerns to a cardiologist? Do you feel that the sweating is excessive or all over your body?
I was just diagnosed with this also. I had valve replacement in 2014 and believe this led to me getting dialated cardiomyopathy. My dr. Has me on medications to help with it. So far, I’ve seen a positive difference in my pulse and how I feel. I didn’t realize I had symptoms until I started medication...I noticed I felt better. I am pleased with my cardiologist and am following his advice. I ask a lot of questions to help me understand. That’s the best I can offer right now. I’m currently waiting for another Electro cardiogram to be done to see if I have improved...
I am a 41 year old with dialated cardiomyopathy, not sure how to handle all this. Any suggestions?
Hi, @camaroyo, and welcome to Mayo Clinic Connect. @monamampm - great to hear from you.
I've merged your posts with this discussion called "Dilated Cardiomyopathy" so that you can talk with other members in similar situations. Please meet @michelep1964 @cynaburst @clink54 @predictable @jillybeans22 @tiredofbeingsick and others. @monamampm and @camaroyo - hoping these members can offer some support in dealing with your dilated cardiomyopathy.
@camaroyo - glad you are pleased with your cardiologist and you've seen a positive difference so far with your medication. You mentioned following your doctor's advice. Beyond the medication prescribed, wondered if he or she had any self-care or lifestyle advice you could share? What medication are you currently taking?
@monamampm - were there any specific aspects of how to handle your diagnosis you had questions about?
Hi, sorry..this went to junk mail & just saw it. I was just diagnosed in Aug with this. I had heart valve replacement in 2014 and believe the dialated cardiomyopathy is probably a result of that. Plus I had to get a pacemaker cause atrial fibrillation meds caused my heart rate to drop to 30 and below. The meds I was put on for the cardiomyopathy are Carvedilol (25mg) (Coreg) & lisinipril (10mg). Just increased to 25 mg about a week ago. I’m due for an echo in Jan to see if there is an improvement in my EF rate. But I also take sotalol AF, coumadin (warfarin) & metformin. The sotalol AF & coumadin are for when I had atrial fibrillation (which I haven’t had since surgery). I have low numbers (meaning not way about the limit) too on diabetes and watch that. The lifestyle has not changed for me fortunately as I don’t have significant symptoms that I am aware of. But best lifestyle is to exercise... walking is my best right now. Have foot problems and surgery in a couple days on my right foot, but will start walking again ASAP. I eat pretty clean, no fried foods, not much red meat at all, drink water daily, don’t eat a lot of sugar, but I love sweets so have moments. But I do have a hard time losing weight now. I could stand to lose some...as time goes on and if I see issues with this, I may have questions.
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1 ReactionDo not be afraid of higher doses of medications that lower the blood pressure. Are bodies are amazing! If your meds are titrated slowly (very slowly), your body adjusts and the BP might stay stable. If your BP goes down, you go back to the lower doses and later try again.
-
Like -
Helpful -
Hug
1 Reactionhello @sophieshor : your story has some matches with mine, quite similar, of course not 100 %.!!. Not to spite I can mention the treatment I got ,apart from other drugs, like beta-blocker . I described it in some posts / mayo connect, The cardiologist gave me Digitoxin, which is a very old medication, but now the cardiologists deal with this preparation again. I would recommend you to ask your cardiologist. I know that it ist available in the USA . maybe you can look it up in the medical literature, otherwise I can explain the effects of digitoxin on your heart. My heart improved definitely.
yoanne
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Like -
Helpful -
Hug
2 ReactionsHello, I am new to the Mayo Clinic Connect -I was born with MVP and didn't have any major problems until I had Robotic Mitral Valve Repair in 2017, which was due to bileaflet prolapse and severe regurgitation. My EF was at 32 in January the following year. I had an MRI that showed no signs of having a heart attack. I went through cardiac rehab from January through April and was feeling stronger. I did however have Tachycardia that started around January 2018, which I started taking Corlanor 2.5 mg twice a day. I had to decrease to once a day due to presyncopal symptions. I took this for a year and continued excercising. In May of 2018 my EF was 55%, which stayed at that % until an Echo that I had in April 2019. My EF is now 40% and showing signs of mitral regurgitation which there was none post surgery. I also was diagnosed with hyperlipidemia with an LDL of 198 and started Crestor. I have nonischemic cardiomyopathy and grade 1 diastolic dysfunction. I started taking Ramipril 2.5 mg once a day and Carvedilol 3.125 mg twice a day. I started seeing a new Cardiologist in May and he wanted to check for blockages by doing a Cardiac Cath. I have no blockages. He had me stop taking the Corlanor. I am currently feeeling more tired and my heart rate is increasing during non strenuous activities like walking up a flight or two of stairs. My problem is since I had my surgery my BP has been low. I am now getting readings of 88/68 more frequently. I am concerned about taking higher doses of my medications because my BP is already low, but I am having more symptions and tire more easily. Does anyone know of any medications that will help my heart to recover that does not have an effect on blood pressure. I will have another ECHO done in November. Thank You
<p>While riding on the back of a motorcycle, I noticed my heart not feeling right, I thought it would go away, a few minutes later I became very dizzy and was close to passing out, I think I did for a few seconds, because next thing I noticed I was leaning with all my weight against my husband. He pulled off the road and I guess I came back but very disoriented, dizzy didn’t know where I was. I then started throwing up but still out of it. He was able to get me into a garden center, no air conditioning but out of the sun. I slowly started coming around after a few minutes I had a cold cloth for my face and drank some water. Temp was in the 80’s and we had only been riding for just over an hour. Went to the emergency room, got an IV and was released. They said my EKG show PVC’s I have dilated cardiomyopathy and take two medications. I think it was my heart that started it all, because that’s what I felt first. Has anyone had any problems like this before?</p>
Hi @madhatter, you may have noticed I moved your post to this discussion you had previously posted in so that all your posts would be in one place. Simply click VIEW & REPLY in your email notification to find your post.
That must have been a frightening experience. I'd like to introduce you to @yoanne and @sophieshor as they may be able to offer you support.
Back to you @madhatter, have you mentioned this episode to your cardiologist?
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Helpful -
Hug
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