Meds for cardiomyopathy – Ischemic/Non-Ischemic

Posted by archer @archer, Aug 5, 2018

Would like to know the medications and other treatments that other patients have been given for cardiomyopathy with heart failure symptoms.

I am in my late 30's and was diagnosed with nonischemic congestive cardiomyopathy based on a ecocardiogram about a year and a half ago. Dr. said ejection fraction is between 40 and 50 and I was proscribed an ACE inhibitor. At my most recent visit I was set up with a Holter monitor and the Dr. said I had one ventricular tachycardia event, over the 24 hour monitoring period, which lasted for a few minutes. I have had no noticeable symptoms related to the cardiomyopathy nor tachycardia. I consider myself pretty physically fit and complete in and train for several endurance athletic events each year (marathons, 50k, 50 mile, triathlon, century rides) all done with no noticeable symptoms. The Dr. has been pushing for me to start a Beta Blocker in addition to the ACE inhibitor, but I am concerned that this may impact my ability to continue to compete in endurance athletics at my current level. I also don't really want to be on any medication for an extended period of time if it is not necessary. Questions are, do I need to be on the ACE inhibitor and/or Beta blocker. What types of side affects should I expect if I were to start the Beta Blocker, both general and those related to competing in endurance athletic events.

REPLY
@heartrunner

I am in my late 30's and was diagnosed with nonischemic congestive cardiomyopathy based on a ecocardiogram about a year and a half ago. Dr. said ejection fraction is between 40 and 50 and I was proscribed an ACE inhibitor. At my most recent visit I was set up with a Holter monitor and the Dr. said I had one ventricular tachycardia event, over the 24 hour monitoring period, which lasted for a few minutes. I have had no noticeable symptoms related to the cardiomyopathy nor tachycardia. I consider myself pretty physically fit and complete in and train for several endurance athletic events each year (marathons, 50k, 50 mile, triathlon, century rides) all done with no noticeable symptoms. The Dr. has been pushing for me to start a Beta Blocker in addition to the ACE inhibitor, but I am concerned that this may impact my ability to continue to compete in endurance athletics at my current level. I also don't really want to be on any medication for an extended period of time if it is not necessary. Questions are, do I need to be on the ACE inhibitor and/or Beta blocker. What types of side affects should I expect if I were to start the Beta Blocker, both general and those related to competing in endurance athletic events.

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Well I can tell you from experience that you don't want to have tachycardia events. The medication prescribed will reduce tachycardia. It shouldn't affect you're exercise goals but if you don't take them you are risking having a significant heart event. Tachycardia can lead to cardiac arrest so it's not something to take lightly

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Hi @heartrunner,

You may notice that I moved your message and combined it with this existing discussion as I thought it would be beneficial for you to connect with other members who may be able to share their insights.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Here’s some information you might find useful:
– Ischemic cardiomyopathy is caused by coronary artery disease and heart attacks.
– Non-ischemic cardiomyopathy is not related to coronary artery disease. This type of cardiomyopathy includes all causes of decreased heart function other than those caused by heart attack or blockages.
– The most common causes of non-ischemic cardiomyopathy are viral infection (viral myocarditis), drug reactions, inflammation or autoimmune reactions (lupus myocarditis, etc).
– Beta-blockers and ACE-inhibitors can relax the heart, lower blood pressure and slow the heart to improve filling and pumping function. https://www.mayoclinic.org/diseases-conditions/cardiomyopathy/symptoms-causes/syc-20370709

I’m tagging @predictable @hopeful33250 @thankful as they might be able to shed more light on this issue; I’d also encourage you to read these articles – the first story concerns a patient who was diagnosed with viral myocarditis (a form of non-ischemic cardiomyopathy):
– Meet Yasmin: A Sudden Detour for Heart Transplant, Then Back in Stride https://connect.mayoclinic.org/page/transplant/newsfeed-post/meet-yasmin-a-sudden-detour-for-heart-transplant-then-back-in-stride/
– This journal article outlines "Management of patients with non‐ischaemic cardiomyopathy” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1861466/

@heartrunner, just as some underlying conditions can bring about cardiomyopathy, cardiomyopathy in turn can cause other complications. Have you explained your concerns about medications to your doctor?

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@heartrunner

I am in my late 30's and was diagnosed with nonischemic congestive cardiomyopathy based on a ecocardiogram about a year and a half ago. Dr. said ejection fraction is between 40 and 50 and I was proscribed an ACE inhibitor. At my most recent visit I was set up with a Holter monitor and the Dr. said I had one ventricular tachycardia event, over the 24 hour monitoring period, which lasted for a few minutes. I have had no noticeable symptoms related to the cardiomyopathy nor tachycardia. I consider myself pretty physically fit and complete in and train for several endurance athletic events each year (marathons, 50k, 50 mile, triathlon, century rides) all done with no noticeable symptoms. The Dr. has been pushing for me to start a Beta Blocker in addition to the ACE inhibitor, but I am concerned that this may impact my ability to continue to compete in endurance athletics at my current level. I also don't really want to be on any medication for an extended period of time if it is not necessary. Questions are, do I need to be on the ACE inhibitor and/or Beta blocker. What types of side affects should I expect if I were to start the Beta Blocker, both general and those related to competing in endurance athletic events.

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Hello @heartrunner. I'd like to welcome you to Connect. I'm glad that you posted about your concerns regarding a new regime of heart meds.

I have taken an ACE Inhibitor for a number of years and a little over two years ago added a Beta Blocker. I feel much better. The two meds work in different ways. The Beta Blocker keeps the heart rate slower, which protects the heart from damage. Given the fact that your ejection fraction is between 40 and 50 would indicate that you might want to do everything needed to protect your heart from further damage.

Have you talked to your doctor regarding your concerns about adding the Beta Blocker? Has he suggested one particular Beta Blocker?

Remember, it is always your right to get a second opinion, but please remember that heart functioning is too important to ignore.

As you are comfortable doing so, will you post an update about your decision?

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@fireguy8891

I am a 48 year old with no past history. Been working as a firefighter for the last 23 years. Also do crossfit 2-3 times a week. I have no medical history, and was on no meds until this diagnosis. I had been to cardiologists several times over the last 20 years. Most recently due to a tachy rhythm several hours after exercise.
I went to the ER, in February, after having chest palpitations and L jaw pain. ER basically ruled out a stemi, and recommended I see a cardiologist, just to be safe. After an echo, diagnosed with Non-ischemic cardiomyopathy, and a lvef of 25-30%. I was not given a cause, though they ruled out coronary artery disease or blockage with an angiogram. I do have mild Left ventricular hypertrophy. Also a left anterior vesicular block.
My cardiologist seems pretty optimistic about my returning to work, and has no problem with me continuing to CrossFit. (I have not as of yet)
I am taking Metoprolol ER 25mg 1/day, losartan 25mg 1/day, and spironolactone 25mg 1/day. She is planning on doing another echo in 3 months to reassess.
Questions
1. What are the recommendations for exercise and heart disease?
2. Since starting these meds, my resting heart rate has dropped, but my blood pressure has increased. 118/76 to 140/90 Why?
3. What is the underlying cause? Is it possible, the low ef is due to the block? What other tests would help identify the cause?
4. Why isn’t an echocardiogram used more to rule out causes for symptoms? I feel like I have probably been living with this for years, was just missed due to lack of severe symptoms and fairly “normal” EKGs.
5. What is the probability of my return to firefighting? Anyone else in a strenuous job with a reduced EF?

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@fireguy8891– I have told that they often call what I had as a Widow Maker because frequently this happens to active people who run and exercise regularly and so when we experience these feelings they are often ignored. The consequence most often ends in death. The pain I felt was extreme so I can't imagine ignoring what I felt, but it would have been way smarter if I chose to call an ambulance rather than have my wife drive me up to the ER.
Even though I was certain I was having a HA all the tests they were running in the ER were showing that I was not presenting?
Once they got the pain managed they told my wife that they planned to admit me and do a stress test in the morning. They brought in a Echo Tech and about 10 minutes later he left the room and returned quickly with the Cardiologist in tow. It was all hand on deck at that point.
I was told I had a EF of about 30% at the time and started up Rehab within a few weeks. Since I was familiar with much of the equipement I started right in with their direction. Bottom line I could'nt wait to get back to the gym so I could begin building up my cardio and strength. I am on both Metoprolol, Lisenipril and Plavix at that time. A year later I was doing real well and had my checkup with the Cardiologist and he had a new Echo done which showed no real change. I was bummed since I had worked so hard. My HA was in 5/14 and now a year later after all that work I was being told no real change!
We spend Aprils down in AZ. so I made an appt. at the Mayo in Scottsdale to have a 2nd opinion. The Cardiologist I was assigned to was excellent and spent most of the day with me as I took several tests. We ended doing a Stress Echo. This Dr. really pushed me, but I had the confidence I was in good hands.
I was on the tredmill for around 20 minutes and started off slow, but he kept asking me can I go higher and I would say yes. We ended at an elevation of 14 and a speed of 5.8. I was jogging hard and that last year never got my heart rate up past 135 with the Beta Blocker. I was at 150+ at the point he had me drop to the bed to take more pictures. Afterwards we met in his office for a 1/2 hr. and he said he would have to do more calcs. but he felt very confidently that I was at more of 145-150 EF. That did wonders for my mindset and was so glad I got that 2nd opinion! Mayo is wonderful!! Jim@thankful

REPLY

I am a 48 year old with no past history. Been working as a firefighter for the last 23 years. Also do crossfit 2-3 times a week. I have no medical history, and was on no meds until this diagnosis. I had been to cardiologists several times over the last 20 years. Most recently due to a tachy rhythm several hours after exercise.
I went to the ER, in February, after having chest palpitations and L jaw pain. ER basically ruled out a stemi, and recommended I see a cardiologist, just to be safe. After an echo, diagnosed with Non-ischemic cardiomyopathy, and a lvef of 25-30%. I was not given a cause, though they ruled out coronary artery disease or blockage with an angiogram. I do have mild Left ventricular hypertrophy. Also a left anterior vesicular block.
My cardiologist seems pretty optimistic about my returning to work, and has no problem with me continuing to CrossFit. (I have not as of yet)
I am taking Metoprolol ER 25mg 1/day, losartan 25mg 1/day, and spironolactone 25mg 1/day. She is planning on doing another echo in 3 months to reassess.
Questions
1. What are the recommendations for exercise and heart disease?
2. Since starting these meds, my resting heart rate has dropped, but my blood pressure has increased. 118/76 to 140/90 Why?
3. What is the underlying cause? Is it possible, the low ef is due to the block? What other tests would help identify the cause?
4. Why isn’t an echocardiogram used more to rule out causes for symptoms? I feel like I have probably been living with this for years, was just missed due to lack of severe symptoms and fairly “normal” EKGs.
5. What is the probability of my return to firefighting? Anyone else in a strenuous job with a reduced EF?

REPLY

Hi @fireguy8891 I'd like to join @thankful in welcoming you to Connect! That must be so nerve-wracking not knowing how this diagnosis will affect your daily life and career. You may have noticed I moved your post to this existing discussion on medications for non-ischemic cardiomyopathy so that you can connect with others who have similar experience.
Simply click VIEW & REPLY on your email notification to get to your post and meet Connect members like @heartrunner who has mentioned non-ischemic cardiomyopathy in the past and also @predictable and @hopeful33250 who may be able to share thoughts on this as well.

How have you been feeling on the meds? Have you had any symptoms besides the decreased resting heart rate?

REPLY
@ethanmcconkey

Hi @fireguy8891 I'd like to join @thankful in welcoming you to Connect! That must be so nerve-wracking not knowing how this diagnosis will affect your daily life and career. You may have noticed I moved your post to this existing discussion on medications for non-ischemic cardiomyopathy so that you can connect with others who have similar experience.
Simply click VIEW & REPLY on your email notification to get to your post and meet Connect members like @heartrunner who has mentioned non-ischemic cardiomyopathy in the past and also @predictable and @hopeful33250 who may be able to share thoughts on this as well.

How have you been feeling on the meds? Have you had any symptoms besides the decreased resting heart rate?

Jump to this post

My palpitations have stopped. My BP has increased. Also I’m not sure if this is procedure related, med related, or psychosomatic, but every time I sneeze, I feel pain in my chest.

REPLY
@thankful

@fireguy8891– I have told that they often call what I had as a Widow Maker because frequently this happens to active people who run and exercise regularly and so when we experience these feelings they are often ignored. The consequence most often ends in death. The pain I felt was extreme so I can't imagine ignoring what I felt, but it would have been way smarter if I chose to call an ambulance rather than have my wife drive me up to the ER.
Even though I was certain I was having a HA all the tests they were running in the ER were showing that I was not presenting?
Once they got the pain managed they told my wife that they planned to admit me and do a stress test in the morning. They brought in a Echo Tech and about 10 minutes later he left the room and returned quickly with the Cardiologist in tow. It was all hand on deck at that point.
I was told I had a EF of about 30% at the time and started up Rehab within a few weeks. Since I was familiar with much of the equipement I started right in with their direction. Bottom line I could'nt wait to get back to the gym so I could begin building up my cardio and strength. I am on both Metoprolol, Lisenipril and Plavix at that time. A year later I was doing real well and had my checkup with the Cardiologist and he had a new Echo done which showed no real change. I was bummed since I had worked so hard. My HA was in 5/14 and now a year later after all that work I was being told no real change!
We spend Aprils down in AZ. so I made an appt. at the Mayo in Scottsdale to have a 2nd opinion. The Cardiologist I was assigned to was excellent and spent most of the day with me as I took several tests. We ended doing a Stress Echo. This Dr. really pushed me, but I had the confidence I was in good hands.
I was on the tredmill for around 20 minutes and started off slow, but he kept asking me can I go higher and I would say yes. We ended at an elevation of 14 and a speed of 5.8. I was jogging hard and that last year never got my heart rate up past 135 with the Beta Blocker. I was at 150+ at the point he had me drop to the bed to take more pictures. Afterwards we met in his office for a 1/2 hr. and he said he would have to do more calcs. but he felt very confidently that I was at more of 145-150 EF. That did wonders for my mindset and was so glad I got that 2nd opinion! Mayo is wonderful!! Jim@thankful

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Thank you! I am set up for an appointment this week at National Jewish. Hopefully will get more guidance!

REPLY

@fireguy8891 Hi welcome to Mayo Connect. I too back at the start of my journey had a low ef due to an enlarged Heart after a virus cause me to build up fluids in the sac around the heart. This caused the heart to work harder and enlarged. This is yhe one muscle we don't want larger. After they recommended a pacemaker in my case i left the Hospital with an ef of 5% . My case was definitely worse than yours but i wanted to write because at the time i worked a real physical job as an electronic technician for the dept of energy which required me to go to mountain tops and climb towers up to 300 ft. Well after a recovery period of 6 weeks after the pacemaker procedure i was back at work light duty for 6 months and then i was back working as normal. They did give me some time to build up to climbing towers again but within a couple of years i was climbing again. My EF came up also and after the first year it was about what yours is now and by 2 years i was about 45-50. I also worked out at a moderate pace first thru cardio rehab then on my own. I loved to hike so i was back hiking moderate trails rather quickly up to 6-7 miles within a couple of years. I will warn you tho i think what i didn't take seriously enough was i still smoked and enjoyed a few beers on the weekends. I did quit smoking finally after i got shocked my first time but i think i did more damage which ended up needing a Heart transplant 2 years ago. But o remember talking to my EP Cardiologist back then and he assured me the sky is the limit. He actually knew of some with heart issues and pacemakers that compete in triathlons. So he always told me to listen to your body and adjust as needed. And i recommend Cardio rehab will help you adjust your workout based on how your heart reacts. I'm hear if you have any questions.

REPLY
@danab

@fireguy8891 Hi welcome to Mayo Connect. I too back at the start of my journey had a low ef due to an enlarged Heart after a virus cause me to build up fluids in the sac around the heart. This caused the heart to work harder and enlarged. This is yhe one muscle we don't want larger. After they recommended a pacemaker in my case i left the Hospital with an ef of 5% . My case was definitely worse than yours but i wanted to write because at the time i worked a real physical job as an electronic technician for the dept of energy which required me to go to mountain tops and climb towers up to 300 ft. Well after a recovery period of 6 weeks after the pacemaker procedure i was back at work light duty for 6 months and then i was back working as normal. They did give me some time to build up to climbing towers again but within a couple of years i was climbing again. My EF came up also and after the first year it was about what yours is now and by 2 years i was about 45-50. I also worked out at a moderate pace first thru cardio rehab then on my own. I loved to hike so i was back hiking moderate trails rather quickly up to 6-7 miles within a couple of years. I will warn you tho i think what i didn't take seriously enough was i still smoked and enjoyed a few beers on the weekends. I did quit smoking finally after i got shocked my first time but i think i did more damage which ended up needing a Heart transplant 2 years ago. But o remember talking to my EP Cardiologist back then and he assured me the sky is the limit. He actually knew of some with heart issues and pacemakers that compete in triathlons. So he always told me to listen to your body and adjust as needed. And i recommend Cardio rehab will help you adjust your workout based on how your heart reacts. I'm hear if you have any questions.

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@danab Thank you for sharing your story! I do feel a lot better after speaking with the Dr at National Jewish. He was optimistic for my recovery and return to work. He recommended I see a cardiomyopathy specialist as well as an occupational specialist. So I’m still working on trying to figure out the cause, and fine tune the treatment. Just the hope of recovery alone has improved my mental state tremendously! I will definitely take your advice about cardiac rehab! I have not worked out since my diagnosis, and have some anxiety about doing anything. Both cardiologists said I would be fine doing cardio, but to refrain from heavy weights. I would just feel more comfortable with some guidance and monitoring.

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@fireguy8891

@danab Thank you for sharing your story! I do feel a lot better after speaking with the Dr at National Jewish. He was optimistic for my recovery and return to work. He recommended I see a cardiomyopathy specialist as well as an occupational specialist. So I’m still working on trying to figure out the cause, and fine tune the treatment. Just the hope of recovery alone has improved my mental state tremendously! I will definitely take your advice about cardiac rehab! I have not worked out since my diagnosis, and have some anxiety about doing anything. Both cardiologists said I would be fine doing cardio, but to refrain from heavy weights. I would just feel more comfortable with some guidance and monitoring.

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One other thing was that during Cardio Rehap you are wearing a heart monitor and a nurse is watching it. That alone was the key to reducing my stress. I would always ask how it looked and it was always fine. If they do see something they will usually just ask you to back off a little. And the other thing is i was doing the rehab at the Hospital i got the pacemaker at so knowing that if anything ever did happen i was right where i needed to be.

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