Harry Lever, MD
Tuesday, August 17, 2018 | Noon
Hypertrophic cardiomyopathy (HCM) is a complex type of heart disease that causes thickening of the heart muscle (especially the ventricles, or lower heart chambers), left ventricular stiffness, mitral valve and cellular changes. Harry Lever, MD, Director of the Cleveland Clinic Hypertrophic Cardiomyopathy Center answers your questions about HCM.
- View more information on hypertrophic cardiomyopathy.
- If you need more information, contact us or call the Miller Family Heart & Vascular Institute Resource & Information Nurse at 216.445.9288 or toll-free at 866.289.6911. We would be happy to help you.
- View previous chat transcripts.
- Visit Hypertrophic Cardiomyopathy Association.
Irregular Heart Rhythms and HCM
Rosasham: I am a 62-year-old woman with non-obstructed HCM. Currently taking Eliquis and Bisoprolol for paroxysmal afib, but mostly no symptoms. My cardiologist recently recommended an ICD after 14-day Holter showed five runs of non-sustained v-tach (longest nine beats at 76 bpm – and fastest three beats at 141 bpm). I also have blunted blood pressure during exercise and “moderate scarring”, although percentage wasn’t specified. Q: Is an ICD warranted in my case – or does my age mitigate the three risk factors I have?
Harry Lever, MD: This is questionable - we would need to investigate this further. We need to know the percentage of the scar and other information. We would be happy to evaluate you here at Cleveland Clinic.
BWN721: I am currently on Sotalol 80 mg and verapamil 120 ER. I have OHCM with 80 resting LVOT gradient. I have had and AFIB event before going on this combination. I had been on Verapamil 360 mg for several years but developed pain in breast because the Verapamil caused the release prolactin which is what was causing the pain. The AFIB event happened after I went off of Verapamil completely. I was only on Bystolic 5mg at the time of the AFIB event. Should I have been on another drug after they took me off of Verapamil? The pain in my Brest is back I assume from the lower dose of verapamil. I am looking at getting into the phase three study for Mavacamten and would have to go off the Verapamil to be in the study but can stay on Sotalol for the study. Is there any major risk of going off of the Verapamil? When I was first diagnosed with HCM is was but on a beta blocker but I was so tired I would struggle to walk even short distances and was very sleepy all the time.
Harry Lever, MD: If you have afib with a significant LVOT gradient you probably should have a septal myectomy and maze procedure.
kennedy8480: Regarding the Friday, August 17, 2018 chat on Hypertrophic Cardiomyopathy. I have this condition and now afib/aflutter still after two ablations. Taking Tikosyn and metoprolol. What next? What is your opinion of using amiodarone to treat this condition?
Harry Lever, MD: We need to know if there is LVOT and would prefer not to use amiodarone long term; you should be evaluated further to make a decision.
kennedy8480: Sorry, what is LVOT?
Harry Lever, MD: LVOT: left ventricular outflow tract - and this is referred to as the obstruction area between the aortic valve and the mitral valve.
bob: What is the indication for ICD in a patient with HCM ?
Harry Lever, MD: If there has been an episode of ventricular tachycardia associated with loss of consciousness; episodes of rapid ventricular tachycardia; prolonged excessive scarring in the muscle; cardiac arrest.
Hearts2hearts: Good Afternoon Dr. Lever. My husband 61 Years old, has HOCM ...two days ago I listened to his heart and it sounded very different (?S4) than it has ever sounded. He said, “I feel fine “. We come to your clinic every November but saw you in April because his gradient was 180 in November 2017. I suggested he schedule his appointment with you sooner than November- but because he feels fine he doesn’t think it’s necessary. What do you suggest? And thank you to the HCM association for posting this web chat on your website- timing could not have been better. Grateful for all you. Kind regards, Barbara
Harry Lever, MD: Why don't you send me a MyChart question so I can look over the chart and give you a good response?
Hearts2hearts: New heart sounds - ?S4 - 9 Years since dx of HOCM - On metoprolol 200mg - Is this concerning?
Harry Lever, MD: Your cardiologist needs to evaluate this in the office.
Bobcatmom: My question is: I had a successful redo septal myectomy in February, 2018. Recently I have been having shortness of breath and chest pain following orgasm and intercourse. This is new. Is this something I should be concerned about or is this something that goes along with having HCM? It goes away after about 3-5 minutes. Thank you.
Harry Lever, MD: We need to see you to see why you are having these symptoms.
mimosa: I'm 69 years old. Diagnosed with HOCM. Had echo, stress echo, halter monitor and MRI near end of 2016. Being treated with 50mg metoprolol daily. HR is usually 50-60, BP around 130/80. Have done moderate weight resistance machines and stationary bike for years with no problems or symptoms. Feel better when I do. Never have chest pain. Worst symptom: When carrying things for a distance or up flight of stairs especially in heat I fell a need to stop and wait to get enough air or might I pass out. Just an uncomfortable feeling but a little scary if it didn't stop. Doesn't always happen and seems to have stopped lately. My cardiologist thinks I should be evaluated by someone with more experience with this. I'm three hours from Cleveland. What would you recommend I do?
Harry Lever, MD: We need to see you and evaluate you. Please call for an appointment with our Hypertrophic Cardiomyopathy Center.
dcnanney: After 61 months and five interventional cardiologists in Los Angeles area, plus consultation with the HCM team at Stanford University Medical Center, my HCM symptoms are not mitigated and are getting worse. During this month (August), in addition to ongoing wild swings in blood pressure and orthostatic hypotension of both feet (while on Eliquis® 5mg BID, atenolol 25mg and losartan 100mg HS), I have had two episodes of temporary loss of sensation, first from fingers to elbows and then all the way to shoulders, plus deltoid pain and pressure in the chest region. I am looking for advice as to what to do next to resolve symptoms and quality of life - short of traveling to Cleveland, hopefully. What do you suggest? (My wife, an RN, has told me that my symptoms are prequel to possible stroke.) Thank you.
Harry Lever, MD: We would need to see your actual MRI and echo films to start with and then we can go from there - we can do a MyConsult second opinion if you don't want to come here for a visit - if you come here - you need to bring your films or send them ahead of time.
Blood Pressure and Hypertrophic Cardiomyopathy
kehoe: Most effective meds for HCM-I have low blood pressure.
Harry Lever, MD: We need to know if there is outflow tract obstruction, how thick the heart is. Usually we use beta blockers however we cannot advise you without more information.
earl359: My mother is 74 years old and her blood pressure goes down to 90/70, and she gets a dizzy/weakness feeling to her. She has been to her doctor in the Youngstown area about it and was told not to worry about it. I just wanted to report to you and Cleveland Clinic that I started giving her 100mg of Coenzyme Q10, and her blood pressure has improved, and she is feeling a lot stronger. Doctors seem to mock this type of supplement. My understanding is that this is a prescribed drug in Japan, and I can remember it being reported by Dan Rather over 20 years ago on the evening news as healing a girl’s heart whose heart was failing. Has Cleveland Clinic done any tests on this or is it ignored because there is no money to be made on it from the drug companies? I believe this is a fair question, and quite frankly a long overdue one.
Harry Lever, MD: We use it for patients with pain while using lipid lowering medications. There is some information within research studies that shows it may lower blood pressure in some cases. Use of supplements such as Coenzyme Q 10 should be discussed with your doctor.
AZ Spunky: Please discuss the management of pulmonary artery hypertension in the presence of (and possibly resulting from) HCM.
Harry Lever, MD: Pulmonary hypertension can be related to a number of factors. One is severe left ventricular outflow tract obstruction. Another may be severe mitral regurgitation. The third may be related to severe diastolic dysfunction. The treatment depends on the cause of the pulmonary HTN and this would need to be thoroughly evaluated before treatment recommendations are made.
Diagnostic Testing and Evaluation for HCM
dorothy77: What is the best diagnostic test for HCM - echo, MRI or CT scan? For following patients who have HCM, how often should you get them done?
Harry Lever, MD: The first test we start with is an echo; to assess the exercise tolerance we do a stress echo. The MRI is very helpful in assessing scarring and the alignment of papillary muscles which is very important when evaluating for surgery. We are starting to do MRI scans every 3-4 years to assess possible progression of scarring.
pickel3: What are the indicators you look for on echo to see if the HCM is worsening?
Harry Lever, MD: Increasing septal thickness; Worsening or increasing outflow tract gradient; Sometimes there are no changes in the anatomy at all but patient can have worsening symptoms.
kennedy8480: Given that I have non-obstructive HCM, an enlarged left atrium, and atrial fibrillation, what sort of specialist should I see if I come to Cleveland Clinic? Where should I start? (Age 79.)
Harry Lever, MD: You can see one of the physicians who are part of the Hypertrophic Cardiomyopathy Center and an atrial fibrillation specialist.
ibexjeff: Is a beta blocker the best way to treat and regulate the symptoms and/or progression of Hypertrophic Cardiomyopathy?
Harry Lever, MD: Yes - this is the class of drugs that I use frequently. The one that I prescribe most often is metoprolol succinate. Please be aware of the manufacturer of the drug you are using- as some particularly those coming from India do not work very well.
BWN721: Any thoughts on the new drug trial for Mavacamten from MyoKardia for the treatment of OHCM?
Harry Lever, MD: I do not have any data on that medication.
gd1822: Is decrease of libido a side effect of losartan or metoprolol? How about fatigue and difficulty sleeping? If so, what can be done?
Harry Lever, MD: It is reported - work with your doctor to get the right dose for you.
htrainbow: Why would you not use amlodipine long term? I recently developed high blood pressure and was put on two other medications that caused bad side effects, in addition to the bisoprolol 5mg I was already on for the HCM. One year ago, I was diagnosed with HCM after a fainting incident with 20/30 minute loss of consciousness. The original echo showed septal wall thickness of 1.9, more recent echos show 1.5 to 1.7. Do you think it can continue to decrease?
Harry Lever, MD: I would get it re-measured. Amlodipine is a vasodilator and if you have outflow tract obstruction it can make it worse (either at resting or provocable).
PPERLMAN: I know that there was some research 5-10 years ago regarding the life expectancy of a person with HCM (both with and without a septal myectomy) vs. normal life expectancy. Has there been any more recent research conducted on this subject?
Harry Lever, MD: We have found that patients who have had successful surgery live longer and better and may live as long as the normal population. There are some recent studies published within the past few months from Dr. Desai and Dr. Smedira.
robincgarvey: Would you please discuss shortness of breath in post myectomy / unobstructed patients?
Harry Lever, MD: It can happen in patients with very stiff left ventricles and it depends upon the anatomy how best to treat these symptoms. It is individualized per patient depending on what is really wrong - so we would need to evaluate the patient to discuss treatment.
gd1822: I had a successful septal myectomy in February. Will the HOCM symptoms return over time? How long to full recovery (following cardio rehab) regarding stamina and less fatigue?
Harry Lever, MD: Usually the muscle does not regrow unless it is a very young individual - less than age 21 years. By three months you should be feeling pretty much recovered.
iamdennisslattery: After a successful myectomy what is the best exercise routine and diet to regain health.
Harry Lever, MD: Best is to walk - we recommend cardiac rehab to assist with activity progression. We are making use now of apple watches and Fitbits to assess heart rate and the distance of exercise/walking. We recommend for everybody Mediterranean heart healthy diet, low carbohydrate diets if they are overweight - they need to lose weight. The apple watch is the most accurate for heart rate. The fitbit has a feature you can record what you are eating and the device will tell you how much energy you are using - calories burnt. There are apps on the apple watch that may do the same thing.
BWN721: Is there a minimum septal wall thickness required before either a type of myectomy?
Harry Lever, MD: This is not a simple answer - it depends on many factors such as septal thickness, mitral valve anatomy, and papillary muscle alignment. There are some people who have outflow tract obstruction but do not need a myectomy - they may need repair of the mitral valve apparatus.
gd1822: Will thickening of the ventricle wall and other related symptoms of HOCM return following septal myectomy?
Harry Lever, MD: Usually not.
Srossen@aol.com: My sister is scheduled for Myectomy with you and Dr. Smedira and I’ll be accompanying her. What sort of pain meds are typically prescribed and what is the anticipated time a patient needs opioids? (We live out of state and I’m concerned about the flight home and getting refills once we arrive). Thx.
Harry Lever, MD: We are actually using lidocaine patches on the chest wall - we try to minimize the use of opioids and we use a lot of anti-inflammatory agents such as ibuprofen and Tylenol. We always suggest patients stay in town for a few days post-surgery and then visit the outpatient clinic prior to returning home.
Srossen@aol.com: Recognizing that this is a broad question, could you please provide guidance to family members on what to expect immediately post-op Myectomy and how to be helpful?
Harry Lever, MD: Family members should be present to hear instructions; they need to have a drug box that allows you to organize the medicines so you don't miss doses; It is helpful to have someone around the first week at home in case you need help or help to get out of bed.
Harry Lever, MD: For some patients sleeping in a lounge chair when you first get home may be helpful or have lots of pillows.
meggyp: How do you know if you have end stage HCM vs. HCM that can be treated with surgery or medications? Is transplant the only option at that time?
Harry Lever, MD: This patient needs to be evaluated to determine the best treatment for them.
kennethr: Why is alcohol ablation (a non-surgery) not as good an option as myectomy which is major surgery?
Harry Lever, MD: It is very dependent on the anatomy. All that needs to be wrong is the thickened septum (not papillary muscle or mitral valve problems). The muscle cannot be excessively thick or thin. There are some people who can have LVOT with a thin septum and abnormalities of the mitral valve. So if there are abnormalities of the mitral valve, alcohol ablation cannot be done. It can cause an excessive amount of scarring in the muscle. When an alcohol septal ablation is done it frequently causes RBBB that means the electrical system to the right ventricle is damaged and, if the alcohol ablation is not successful, then surgery is required and the LBBB is damaged, resulting in the need for a permanent pacemaker. The overall success rate for ablation is 70-75%.
Prevention & Genetic Testing
sunny22: I have a thick heart and been told I have hypertrophic cardiomyopathy. I am on verapamil. I am 56 years old. I do not have any symptoms really except tired sometimes - what is the likelihood at my age that this will get worse. Are there things I should do to prevent this from getting worse?
Harry Lever, MD: There is no way to predict if you will get worse but you need to be re-evaluated each year with echo and Holter monitor to assess heart rhythm.
VP2326: Good afternoon Dr. Lever. What are some things, if any, that can be done to help prevent HCM? I know it can be inherited through genetics. But are there actions we can take to help mitigate developing HCM?
Harry Lever, MD: The only thing that I recommend is that patients who do heavy weight lifting may be prone to a thickened heart. In my practice if you are gene positive but do not manifest the disease, I recommend not doing heavy weight lifting.
boston007: In a person who tests positive for a familial HCM gene, can you share with us any statistics/percentages of the likelihood for that person to actually develop HCM.
Harry Lever, MD: I do not have data about this
gd1822: What is involved in gene testing?
Harry Lever, MD: A blood sample is taken and they look for the genes that have been reported to be associated with the disease.
mtllr19: My husband has inherited HCM and we would like to start a family. What advice do you have for us as plan for children? Should we see a geneticist at this early stage as a couple?
Harry Lever, MD: Seeing a geneticist is a good idea.
marilyn93: I was recently diagnosed with HCM. I have a 2-year-old child. I have not done genetic testing. Should I? Should my daughter be tested too?
Harry Lever, MD: You should get genetic testing. If you are gene positive, then you can test your children - if the children are gene positive, they should be closely monitored. If they are not - they don't have to worry that they will get the disease.
schell: How could this effect athletes playing a sport? Would the individual be able to return to play after surgery and recovery?
Harry Lever, MD: It is very individualized - this is taken to consideration and discussed with each patient.
Diet – Supplements
jjoyce2162: Do energy drinks have negative effects on the heart?
Harry Lever, MD: Yes - we do not recommend them at all - they can cause heart rhythm disturbances.
schell: If you stop consuming energy drinks, will the heart disturbance correct itself?
Harry Lever, MD: It might - Also alcohol should not be used in patients with HCM
Rosasharn: Do you recommend low carb diet for all HCM patients? What about Keto, or is that too extreme?
Harry Lever, MD: I recommend low carbs to keep weight down - I am not sure about keto diets. I would recommend a dietary consult with an expert to discuss that.
phile: What is the current thinking regarding the use of cannabis by HCM patients? Any differences regarding the mode of use (smoking, vaping, ingesting)? Is there any research planned in this area?
Harry Lever, MD: I have no information and I would not recommend it at this time.
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