I’m a 42 year old mum of two teenage boys. Last summer I was diagnosed with dilated cardiomyopathy and severe heart failure. My EF was 18%.
Since then I have been on an ever increasing amount of medication and although my EF rate had improved at my last scan I feel no better in myself.
I am very restricted in what I am able to achieve day to day and feel unwell constantly.
In the last week my health seems to have taken a dive down. I’ve gone from sleeping all the time to not sleeping at all. I’ve now been awake for 33 hours straight even though I’m exhausted.
I feel sick and have no appetite. I’m dizzy and confused. I can’t bear the noise of the tv or radio although I don’t have a headache.
My heart rate is between 100 and 120.
I’m so scared that things are going wrong. My husband is a wonderful man but he is scared too and will not acknowledge that this may well be my heart getting worse. He just keeps saying it must be a virus but I know my body and I know how this feels.
I just want to be able to tell him how I feel without being dismissed because it’s too much to cope with.
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PuzzleDog
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It’s natural to be scared but try not to be anxious as this won’t help how you feel at all. I was in a similar situation to you in 2017.
In addition to your present medications, I would think that you will be having tests to try to identify the cause (blood tests, electrocardiogram, echocardiogram, angiogram, MRI, etc). The medicines you are most likely on at present are intended to slow you down to protect your heart. When do you see your cardiologist next, it may be that they can change your medication to an alternative; people react differently to medications and there may be something that will work better for you and give fewer side-effects.
I’m 64 and the last 18 months have been an emotional rollercoaster for me and occasionally I have felt unable to do anything. My HF was eventually attributed to an unusual arrhythmia. I had a cardiac ablation last year which was unsuccessful. I had another 10 days ago and had a pacemaker fitted at the same time. I feel much improved now.
There have been tremendous advances in cardiology in the last few decades but it may take a little while to find the best course of treatment for you.
It’s difficult for your husband too. Is he able to go with you when you see your cardiologist or cardiac nurse? That would help you both - two heads are better than one when asking questions and listening to what they tell you.
I can really feel your anxiety. I was diagnosed with heart failure last summer quite out of the blue. It took 3 months to slow my heart to under 100 bpm to do the echocardiogram. I have a number of problems with my heart and it's hard to come to terms with what that actually means in real terms. The only thing I can say in looking back over the last 9 months is that the treatment is not the rapid response I expected as in heart attack. It takes some sorting but the meds are doing their job. But I'm tired, I find life hard, and I wish there was some immediate action that would put me back where I was. But I'm adjusting, setting different goals, enjoying more time at home. I get scared at every twinge still but I close my eyes and nap and do feel better when I open them. So please hang on in there and let your heart show you what it can do with some tender loving care.
It is very difficult for those that don’t have heart problems to understand how it feels. I have problems explaining to my wife that I just don’t feel right and can’t sleep properly. She puts it down to anxiety as I am not especially breathless and my chest pain does not feel like angina. Whatever the root of your pain, it sounds like your anxiety is adding to
Your symptoms don't sound like typical heart failure, but you do definitely need to see a doctor, and at least have some blood tests to see if anything's going on, particularly with your high resting heart rate. With cardiomyopathy, viruses etc need to be taken seriously as they do put an extra strain on your heart.
I suspect your husband is not so much dismissing your fears but trying to calm your anxiety. It's always a bit of a tightrope!
Your present problem needs dealing with now, but I also get the impression from your post that you are also rather depressed ( not surprisingly), and if so treating that would be a good idea. My husband also had a cardiomyopathy in his 40s ( he's 68 now) and though you do adjust, it is tough, and a short course of anti-depressants can be useful.
Also, while you need rest particularly in the early stages of diagnosis, my husband's heart failure nurses always emphasised that exercise is also really important once heart failure is stabilised. Now your ejection fraction has improved, walking particularly is very good for your heart - starting gently of course. Sleeping all the time becomes a vicious circle where the rest of your muscles atrophy, and doesn't help your mood. Of course I appreciate that at the moment you are desperate for some sleep.
Hello, my husband has Dilated Cardiomyopathy too, he was diagnosed 2 years ago. It’s a huge shock to you, your husband and family and it takes a good while to come to terms with. I found the Cardiomyopathy UK website really helpful & if you’ve not already discovered it I'd recommend taking a look. They can send you an information pack for free which is excellent. They have a nurse run helpline too who are really kind, knowledgable and available for you and your husband & family. Here’s the link
We’re all different and what has worked for me and my husband may not work for you and yours, but here’s my tips:
Mindfulness and meditation can be brilliant - my husband finds them really helpful but I don’t. I prefer yoga or a walk in the fresh air.
Keep a daily diary of your meds (time and dose), BP & heart rate, symptoms such as my our inability to sleep and how you feel. Then you have factual information to discuss with your GP and Cardiologist.
Ask for help...I used an Employee Assistance Programme provided through my work and had some counselling. My husband built a good working relationship with his GP and had regular chats as they reviewed his meds etc.
Talk to Cardiomyopathy UK and /or the BHF nurses - you and your husband individually or together - for technical info, finding out what questions to ask and general support.
BHF helpline is 0300 330 3311
And this forum is wonderful. Has your husband looked at it too? Mine doesn’t read anything but I find it helpful.
I’m afraid I tend to fuss which my husband finds frustrating so I’m trying to learn not to. I also tend to think that anything causing him to feel worse is a heart issue and that frightens me but I tell him it’s most likely to be “just” a virus or whatever, and to go to Dr if he feels it’s concening. I think that for patients and their loved ones it’s hard to get it right because everyone’s emotions are all over the place. We can only try.
From what you say I’d suggest either talking with 111 about how you’re feeling now if things haven’t improved since you posted or getting a GP appointment tomorrow for a check up and next steps. Don’t put off seeing someone - it’ll put everyone’s minds at rest because you’ll all know either there’s no immediate need for heightened concern or if something needs action that it’s in hand.
Best wishes for you, your husband and family. Let us know how you get on and shout out when you feel like it. Sorry for the long reply.
You make some sense! The post wasn't meant for me but it was because some of your words have touched me. For example what works for you doesn't for your husband. ( Mine never reads anything important he just hands it to me) daily diary I was thinking about last night. I also emailed h.f. nurses for advice. This emphasize s the value of each post. It's going to help someone and maybe a lot of people.x
I guess I am still coming to terms with what is happening to me and still finding it all very scary.
I am going to try to get a GP appointment in the morning. Hopefully they will be able to reassure me I am not about to pass away.
I have had depression all of my adult life following a difficult childhood so I do know all about coping strategies etc.. I will try using them to help with this too.
I have an appointment for an echocardiogram next week. With any luck that will bring good news...
It is 100% sure your quality of life will be back almost to normal but takes a little time. Kindly follow these things.
1) Do consult a very good interventional cardiologist preferably experienced in heart failure.
2) Take the medications without break. At the onset some medications will make you dizzy but get adapted shortly. If not it means it either doesn't suit you or the dosage is high.
3) Hope that you are on beta blockers, diuretics, anti coagulants, statins & arb inhibitors.
4) Cut down heavily on salt. If fluid restriction had been imposed follow it scrupulously.
5) Take more fresh fruits/ vegetables and avoid canned or preservative added foods.
6) 8 hrs sleep is a must and I had the problem with no sleep. My cardiologist prescribed me sleeping pills and even today I am on them since 8 hrs sleep is a MUST.
7) Add parsley, cabbage daily since they are natural diuretics.
8) Depression is a resultant of HF but don't take anti depressants without your doctor's advice. It is sure one fine day this will go away.
9) Always at rest may be soothing but EXERCISE is the key to mend the HF. Consult your cardiologist the most suitable exercise regimen for you and start slowly. Even 10 mts walk counts. The more we devolep our exercise, more the energy we gain and this gained energy will make us to exercise more. However, bear in mind that your resting heart rate is always more than 100 which should be brought down first.
10) Don't Google a lot as most of the posts therien are scary since their results are outcomes of people who suffer the worst far more than us.
11) Above all, out of personal experience, I too suffered a lot, was scared a lot, left my govt job pursuant to the eternal fatigue and depression. I thought I would ever remain as a liability to my family and was praying the ALMIGHTY to take me since survival with these symptoms were worst than death.
But now I feel a lot better, continuing on medications, salt/ fluid restriction, walking regularly and never miss a follow up. Still occasionally this HF symptoms show up suddenly & some adjustments are made for the relief.
Therefore, be assured mam in DCM symptoms are worse but certainly temporary, provided we are in the hands of a good cardiologist and scrupulously follow their advice.
Wow! I just have to reply. I feel I could cry. Such a strong well worded post. As I posted to sha28 words have been written for someone else but you read them and they go deep. So a black day yesterday suddenly becomes a bit brighter. If you have a husband who doesn't acknowledge how ill he is who do you talk to? Who listens to your fears about your own heart failure? I just feel sorry for those struggling without the support.
I can really relate to how you feel. There are some incredibly knowledgeable and kind people on this forum. One thing my darling husband and I have learned through some very frightening times is: just keep haranguing your GP. Take your husband along because sometimes it’s hard to take in what you are being told. Having someone else along helps you get it right.
I’m sure you are frightened for your boys because you mention them in your first sentence. Your GP is overworked and can’t possibly remember all of his/her patients. So do it for him/her and your boys. We’ve have had test results lost, doctors disappear. You have to take responsibility for yourself. Please keep trying and let us know how you get on.
Hi PuzzleDog, I know how you feel I was diagnosed with dilated cardiomyopathy in December 2017 and yes it’s very scary but once you are on the tablets they do help and yes you are restricted to what your body will allow you to do. Some times I sleep really well then another night I’m awake all night and I don’t know why. I hope they sort you out soon. X
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