HCM Fatigue and Poor Sleep - What Can I Do?

Posted by selima109 @selima109, Apr 22 4:00pm

I have HCM and two stents, valves problems
I am 74
I always tired
Doctor add another blood pressure pill
But I still tired
I walking and getting exercise
Not very good sleeper
I give up don’t know what I should be doing

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I have HOCOM, murmur and leaky valve. Taking camzyos now which for some reason keeps me away till midnight.
I take a shower in the afternoons then I take a nap (the shower allows me to sleep in the afternoon and relaxes me). I put soft music in the background at low volume that helps me relax and fall sleep. I hope this helps you.

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@manuelpo

I have HOCOM, murmur and leaky valve. Taking camzyos now which for some reason keeps me away till midnight.
I take a shower in the afternoons then I take a nap (the shower allows me to sleep in the afternoon and relaxes me). I put soft music in the background at low volume that helps me relax and fall sleep. I hope this helps you.

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are you on anything except Camzyos? I also have mitral valve stenosis and regurgitation.
On Metroprol succinate ER.
Trouble sleeping and tired.

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@peggynurse

are you on anything except Camzyos? I also have mitral valve stenosis and regurgitation.
On Metroprol succinate ER.
Trouble sleeping and tired.

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Yes I do, I am on Camzyos 5mg (for 28 days now) and also Metoprolol succinate ER 50 mg (evenings) also Metoprolol 100 mg (early morning), rosuvastatin 20 mg (crestor).

My first echo: LVTO pressure when down from 196 mm Hg (with no camzyos at all) to now only 10 mm Hg in only 3 and a half weeks with camzyos. My septum diameter has not go down yet but I will still be on 5 mg one more month then another echocardiogram will have the doctor decide if camzyos dosage needs to be increased or not.

As soon as I saw the echo results with significant improvement on the pressure gradient, I was able to sleep for the first time in months 7 hours!!! I am not going to get worried or stressed anymore for that make my sleep apnea worst and also does not allow me to sleep enough every nigh so by relaxing and keeping positive attitude and mind I must be fine. I will keep taking 2 mile walk every day.
I hope you feel better soon.

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@peggynurse

are you on anything except Camzyos? I also have mitral valve stenosis and regurgitation.
On Metroprol succinate ER.
Trouble sleeping and tired.

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My last meal no later than 5:00 pm helps me to sleep better. If I eat any amount of food after 5:00 pm I cannot sleep well for the rest of the night.

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I'm so sorry you don't feel well and are always tired. I have no answers, just hope you improve and please call a nurse at your cardiologist office to inquire about your symptoms.

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I have been on 5mg of Camzyos for 6 days. I was always fatigued before and since taking Camzyos, I have not been able to sleep more than 3-4 hours per night. I wanted more energy, but I was not expecting this side effect. As a senior, I was always able to fall asleep quickly, though I would often awake for several hours during the night. Now, I am unable to fall asleep and when I am finally able to in the wee hours, I am only able to sleep for a few hours. Has anyone else experienced this as a side effect of taking Camzyos?

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@bestseller2025

I have been on 5mg of Camzyos for 6 days. I was always fatigued before and since taking Camzyos, I have not been able to sleep more than 3-4 hours per night. I wanted more energy, but I was not expecting this side effect. As a senior, I was always able to fall asleep quickly, though I would often awake for several hours during the night. Now, I am unable to fall asleep and when I am finally able to in the wee hours, I am only able to sleep for a few hours. Has anyone else experienced this as a side effect of taking Camzyos?

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Same thing happened to me sleeping only 4 hours after starting 5 mg camzyos.
I am taking a shower in the afternoon that helps me relax then I take a nap in the afternoon for about 2 more hours which helps a lot.
My first echocardiogram showed the pressure in my heart when down from 195 mm Hg to only 12 mm Hg in only 3 weeks and a half. Since then that I saw that big progress, I am able to sleep now 6 to 6.5 hours per day and I still take a 1 hour nap in the afternoons. This is not fixing the problem but is helping.
In other words, trying to relax and not being worried about my severe HCM since camzyos is working really well is allowing me to sleep better now (not as much as I want but at least I can sleep 6 hours a day which is not too bad).
I hope this helps you. Try to relax and remain positive.

REPLY
@manuelpo

Same thing happened to me sleeping only 4 hours after starting 5 mg camzyos.
I am taking a shower in the afternoon that helps me relax then I take a nap in the afternoon for about 2 more hours which helps a lot.
My first echocardiogram showed the pressure in my heart when down from 195 mm Hg to only 12 mm Hg in only 3 weeks and a half. Since then that I saw that big progress, I am able to sleep now 6 to 6.5 hours per day and I still take a 1 hour nap in the afternoons. This is not fixing the problem but is helping.
In other words, trying to relax and not being worried about my severe HCM since camzyos is working really well is allowing me to sleep better now (not as much as I want but at least I can sleep 6 hours a day which is not too bad).
I hope this helps you. Try to relax and remain positive.

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I appreciate your feedback, Manuel. It always feels better when someone else can corroborate what one person may be going through that is new and different. I have to say that overall, I am truly amazed by this new medication and I am grateful to be able to have access to it. I will be able to relax more about it now that I know it is part of the normal process.
Can I ask if you anyone else has heart issues like HCM in your family? I know my mother had cardiomyopathy and I have one sister that has AFib. Thanks so much for responding to me. Debra

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@bestseller2025

I appreciate your feedback, Manuel. It always feels better when someone else can corroborate what one person may be going through that is new and different. I have to say that overall, I am truly amazed by this new medication and I am grateful to be able to have access to it. I will be able to relax more about it now that I know it is part of the normal process.
Can I ask if you anyone else has heart issues like HCM in your family? I know my mother had cardiomyopathy and I have one sister that has AFib. Thanks so much for responding to me. Debra

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You are welcome @bestseller2025 .
My entire family on my father's side has Obstructive HCM like me.
If you have any other question that I may be of help, please let me know.

Best regards and best luck to you.

REPLY
@manuelpo

Yes I do, I am on Camzyos 5mg (for 28 days now) and also Metoprolol succinate ER 50 mg (evenings) also Metoprolol 100 mg (early morning), rosuvastatin 20 mg (crestor).

My first echo: LVTO pressure when down from 196 mm Hg (with no camzyos at all) to now only 10 mm Hg in only 3 and a half weeks with camzyos. My septum diameter has not go down yet but I will still be on 5 mg one more month then another echocardiogram will have the doctor decide if camzyos dosage needs to be increased or not.

As soon as I saw the echo results with significant improvement on the pressure gradient, I was able to sleep for the first time in months 7 hours!!! I am not going to get worried or stressed anymore for that make my sleep apnea worst and also does not allow me to sleep enough every nigh so by relaxing and keeping positive attitude and mind I must be fine. I will keep taking 2 mile walk every day.
I hope you feel better soon.

Jump to this post

thank you for your info. I’m glad you are doing so well. I was on metoprolol succinate ER morning and night and trying to figure out if it’s better to just take it in the morning or at night.

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