1. < Hypertrophic Cardiomyopathy (HCM)

HCM with no options for medication for relief of symptoms

Posted by rmhc123 @rmhc123, May 3 6:57pm

I have HCM (without blockage) and I am not a candidate for the new medication (Camzyoz?) and no other medications relieve my symptoms (channel/beta blockers or Lasix). I’m wondering how others manage the symptoms of fatigue, shortness of breath, and chest pain. Sometimes I can’t even make it to my mailbox without having to sit down. Other times, it’s ok. Sometimes my heart rate goes up to 120 bpm just due to getting dressed for work. It’s all very scary. I find myself becoming more anxious and definitely depressed.
Can anyone relate?

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metta | @metta | Aug 13 10:44pm
In reply to @walkinggirl "Each of us is different, what may be OK for you may not be OK for..." + (show)
@walkinggirl

Each of us is different, what may be OK for you may not be OK for me or anyone else reading this. No obstruction during a stress test is great news! Are you DRINKING enough water? Should you be adding electrolytes? (Ask about that before using.) If not, it might be why you are dizzy. May I suggest that if you do not trust your cardiologist to find one that you can trust.

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Thank you for your response. I think I am drinking enough water, but maybe not. I fill up my 32 oz water bottle at least 4 times a day (with ice). I had labs done recently and my electrolytes are normal. Good advice about looking for a new cardiologist. I'm fairly new here and don't really know the reputations of the heart doctors. I have an ICD and there is one electrophysiologist. I don't think my cardiologist knows much about HCM. I get the feeling that he is learning as he goes. Not too comforting to me at this point. I have ApicalHCM and my Dr. said that the stress echo did not show any blockage so my chest pains must be coming from something else besides my heart. Is this right?

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1 reply
rmhc123 | @rmhc123 | Aug 13 11:10pm
In reply to @metta "I'm curious... did you used to be more physically active as far as cardio and strength..." + (show)
@metta

I'm curious... did you used to be more physically active as far as cardio and strength training? Do you think it led to increased symptoms? How can you tell your disease has progressed in the two years since your diagnosis? Have your symptoms increased? Or have your echo cardiograms changed? Have your ECG's changed? What medicine have you tried? Do you feel more confident with your new cardiologist? Just trying to make sense of this disease, which I know expresses a bit differently in each of us. Thank you so much for sharing your experience with your HCM.

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Yes, I was more physically active and actually used to teach yoga. I was hiking in the Grand Canyon two years ago when I knew something was wrong. Difficulty breathing. Chest pains.
I received the diagnosis and was placed on a couple of different beta blockers that didn’t help. I am now on Lasix. Not sure it helps.
I can exercise mild-moderate, but sometime symptoms flair and I have to sit down while walking. Stairs are terrible.
I have a doctor at Emory and will begin a clinical trial for a new drug next week. She said I have no other options since I don’t have an obstruction. She said the disease is progressive and my echos and bloodwork will always be abnormal so I shouldn’t obsess over them. It’s just tough because sometimes I can be laying down and have symptoms. Also, she wants me to have sleep apnea test, but I’m not ready for all that yet.
Sometimes it’s a little depressing, so it’s nice to have others who understand.
Thanks for responding.

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rmhc123 | @rmhc123 | Aug 14 3:42pm
In reply to @metta "Thank you for your response. I think I am drinking enough water, but maybe not. I..." + (show)
@metta

Thank you for your response. I think I am drinking enough water, but maybe not. I fill up my 32 oz water bottle at least 4 times a day (with ice). I had labs done recently and my electrolytes are normal. Good advice about looking for a new cardiologist. I'm fairly new here and don't really know the reputations of the heart doctors. I have an ICD and there is one electrophysiologist. I don't think my cardiologist knows much about HCM. I get the feeling that he is learning as he goes. Not too comforting to me at this point. I have ApicalHCM and my Dr. said that the stress echo did not show any blockage so my chest pains must be coming from something else besides my heart. Is this right?

Jump to this post

I don’t have a blockage and was told that my chest pains and symptoms are likely from a build up of fluid on the lungs, which often occurs when a heart doesn’t work correctly. This is why I was placed on Lasix.

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metta | @metta | Aug 14 3:44pm

Of course. I understand how frustrating it is to not really know how what you do is going to affect your HCM symptoms. I'm going to get a new cardiologist who knows more about the Apical HCM variant because the one I have is pretty clueless, which is also very frustrating. I hope your clinical trial with the new drug goes well. Keep us posted.

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walkinggirl | @walkinggirl | Aug 14 4:28pm

Metta, I do not know about your pain and symptoms nor can I give real medical advice. Find a cardiologist knowledgeable with HCM. Where are you located? I would call the cardiology department at the nearest large hospital, preferably a teaching institution - or even Mayo - and get some names. You may need to travel to get better care.

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superkhal | @superkhal | Aug 28 7:46am

Hi, i can definetly relate to u on many of ur symptoms. I'll be in touch shoryly.

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