Feeling very tired and worried. What’s the problem ?

[Bigbrian]

Hi folks, as it says above, now feeling tired and a bit lightheaded. 2/12 years after severe heart failure and CRTd fitted, on top medication entresto and had to lower my bisoprolol as it was taking my pressure too low last month, progress I thought. My EF was 30 when first diagnosed then last year was 50-55 so low normal, no longer on heart failure and feeling good. Bloods very good, pacemaker clinic said my pacemaker has never had to do any work as in stop arythmias, just working away.My worry is my heart is now starting to fail after the 2 1/2 years? Any thoughts on the matter?

My initial problem was due to genetics and the lamin gene!

[080311]

Morning,

Just a thought have you had your bloods done recently? I was found that my iron level was low and put onto iron tablets for 4 months, that tired feeling as now gone, maybe worth an ask with your GP.

Best wishes Pauline

[Bigbrian in reply to 080311]

Hi, thanks for the reply, I will try that thanks

[Denise2011]

Good morning, Bigbrian. How did you get on with the tiredness and lightheadedness? I saw your thread and of particular interest is the fact that you have a CRT-D for arrhythmias. Have they really stopped Brian? Mine did for around 4 weeks and gradually they are all back and it's a nightmare. I'm not told that I need medication for these. I had the most beautiful 4 weeks, albeit some thumping and palpitations. My life is once again pretty miserable! I'm so confused ..... I would love to know if yours have totally stopped and what they were please .... if you have a moment? I'm glad you're out of the woods with the EF .... I'm hoping I will be in time as well. Thanks.

[Bigbrian in reply to Denise2011]

Hi Denise

I lowered my bisoprolol to 7.5 and it is all ok now, I also stopped omeprazole, making me put on weight, furosemide, making me run to toilet in morning too. I weigh myself every morning just in case of water retention but it’s all ok.

My CRTD was fitted due to beating out of sync, I had no heart palpitations at all just felt totally knackered. My blood pressure has went back up to 110/65 ish so that’s good, I definetly think the problem was the bisoprolol and the reduction has helped, I did run this by my GP who referred me to my heart nurse who is fab and she said drop it.

So it’s ok now.

Have you had a CRTD fitted and if so how long ago?

[Denise2011 in reply to Bigbrian]

Hi Brian

That's good and I'm pleased for you. I had problems with Bisoprolol as well and I struggled for years. A lot of people have problems with it, but at least you are able to tolerate a good dose. I understand that the beta-blocker is essential as well as the pacemaker.

Only thing with me is that when I was on Bisoprolol, I still had the irregularities - it did not make a difference at all. My CRT-D was fitted on 8th July and I had around 4 weeks before Ectopics returned (quiet at present), but along came the tachycardias. I don't understand how I can have had a good few weeks, for everything to fall apart. I shall just have to wait and see how it goes I guess.

I've been told by the NHS that the pacemaker doesn't control my arrhythmias, only stops the heart from going too slow. The defibrillator will kick in if my dangerous rhythms get out of hand though. I'm totally confused. I wish my pacemaker would do what yours does and stop the arrhythmias!

I wonder Brian if they will do another EchoCardiogram for you, which will of course show if the heart failure has returned? It is the ultimate test I believe ... as it shows the ejection fraction? Is it worth asking I wonder?

Do keep in touch and let me know please? I don't want to be a nuisance, but it would be interesting. And if you would just tell me please what arrhythmias you had, because they tell me that it does not stop them. I'm beside myself at present, as I've not been feeling good. Thanks Brian. Regards, Denise.

[Alixia]

hello brian - I see you have mentioned the Lamin gene on your post - are you part of the Facebook group ‘laminopathies support’? We have nearly 400 members sharing their experiences and knowledge of Lamin cardiomyopathy. It’s a great support group and resource.