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Shortness of breath despite improvement in LVOT gradient. Has anyone?
Hello everyone,
I have obstructive hypertrophic cardiomyopathy (HOCM) and I’m currently taking mavacamten and verapamil.
My LVOT gradient has improved significantly with treatment, going from 115 mmHg to less than 30 mmHg at rest.
However, over the past two days, I’ve been experiencing some unusual symptoms.
My resting heart rate has been slightly higher than usual, around 80 bpm. While I know this is still within the normal range, it is noticeably higher than my usual resting heart rate.
I’ve also been experiencing shortness of breath, particularly when lying down, as well as when climbing stairs. This is something I hadn’t been experiencing recently.
Interestingly, I was able to complete my workout this morning without any problems, but I still experience this uncomfortable sensation of not getting enough air, even at rest.
My oxygen saturation and other vital signs appear normal.
I’ve contacted my cardiologist and am waiting for guidance.
I would love to hear from others with HOCM:
* Have you experienced similar episodes of shortness of breath despite an improved LVOT gradient?
* Do you notice changes in your breathing when your resting heart rate increases slightly?
* Has anyone experienced breathlessness particularly when lying down?
* Can symptoms fluctuate even when mavacamten seems to be working well?
I would really appreciate hearing about your experiences and what your cardiologists found.
Thank you so much for sharing.
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I have HCM.. I take Camzyos. My 3rd echo will be next week.
It’s awful. Zapped all my energy and my diastolic is 50 to 53..
my family dr and pharmacist say that is too low.. actually dangerous so I am anxious to see my cardiologist on November 16. And yes, I have increased shortness of breath when lying on my back.
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3 ReactionsJe suis vraiment désolée pour vous j espère que ça ira je prierai pour que vous ayez une bonne nouvelle !
Finalement me concernant c était dû à un virus que j ai attrapé qui déclenchait les symptômes de mon asthme plus de peur que de mal !
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1 ReactionHi there...I've been on Camzyos for a year and it is working well as evidenced by my regular echos, etc. Every once in awhile I wake up in the middle of the night feeling breathless. Not sure if it is a stressful dream or anxiety that wakes me up or something else. I take some deep breaths, try to calm myself down and seem to fall back to sleep fairly quickly...This isn't much info but I hope it is helpful...Wishing you blessings and best wishes, Christine
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4 Reactions@judpuds
I am sure you are experiencing some anxiousness over the low BP and breathlessness. It is good you reached out to the pharmacist and dr. I have always had low BP, even before my HOCM diagnosis. I didn't tolerate beta blockers so was put on verapamil for 20+ yrs. When Camzyos came and I was put on the protocol, I felt amazing without the usual exertion dyspnea. However, after 3 months my LVOT had dropped too far and I was also short of breath at odd times. My third echo showed I couldn't stay on the drug. I have no idea if this is the same thing you are experiencing, obviously because as we all say, "everyone is different". I will say that the experience led me to getting the septal myectomy (in Rochester) and I now have zero shortness of breath unless I haven't been drinking enough water, which still pertains to my cardiomyopathy... I just don't have the obstruction part anymore so my function is way better. I hope you are able to get some answers at your next cardiology appointment!
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4 Reactions@joyrcc thanks!
My third echocardiogram is next week and my appointment with the cardiologist the week after. I need to ask him if this is the only alternative because I can’t have the surgery as I am 84.
@joyrcc très interressant ! Une question me vient en tête … si nous faisons l opération et que c est une réussite .. la maladie et les symptômes disparaissent ou nous sommes tjrs porteur de la maladie HCMO mais sans symptômes? Vous qui avez vécu les deux vous recommandez l opération ? Était ce douloureux ?
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1 Reaction@mshcm Excellent questions! Each of us with HCM will always have HCM because it's a part of our genetic makeup. Some are assymomatic all their lives, others have different stories. A septal myectomy removes the obstruction that causes the symptoms, after such a procedure preformed by HCM expert surgeons, the shortness of breath symptom disappears. Other symptoms, too. It was 3 weeks before my 76th birthday 4 years ago when I had a septal myectomy at Mayo Rochester. Was it painful? For me, no it was not painful. Was it scary? Yes. Would I do it again? YES YES YES! I got my life back. There have been many posts here on Connect written by people asking the very same question you asked. Type in your browser: My septal myectomy decision, and 10 things I've learned since. It's a contribution by one of our bighearted participants. Keep asking all the questions you have!