I have idiopathic cardiomyopathy and a very irregular heart rhythm. Both lower ventricles are very weak. It is thought that this may have been virus or toxin related from many years ago and not discovered until it became noticeably symptomatic and diagnosed two years ago with breathlessness and huge palpitation episodes. I’ve always stayed as fit and healthy as I can do, healthy diet and weight, non smoker, no alcohol consumption.
In the two years since diagnosis that I’ve been taking 10mg Bisoprolol, 10mg ramipril and 80mg furusemide my heart has been far more relaxed and further damage minimised. My efraction rate has increased from below 16% to 45%. My heart beats are far less erratic, this was also helped by having a three wire crt-d device fitted.
BUT, the depressing facts are that I’ve encountered three stones of weight gain, terribly low energy levels, higher sugar levels and high cholesterol. I’m not considered obese but I have increased in size to the point that I now cannot wear any of my clothing besides loose things and I avoid seeing anybody if I can help it. It’s very depressing. Whilst I’m grateful for the interventions I’m not feeling able no matter how hard I try to enjoy a reasonable quality of life. I either feel exhausted, in a lot of pain due to other spine and muscle related issues or very depressed.
So…..following a review with my cardiologist at his request I explained that I’d like to try to reduce the Bisoprolol from my life as this weight gain and inability to lose it despite doing everything I can including healthy eating and moving arounf is causing me huge problems with depression and mindset and also causing increased pain. I explained that being my heart rhythm and refraction has improved I’d like to give that a go. He said he wouldn’t recommend it but it’s my choice and that I’d have to do this via my GP. He also suggested I start taking 10mg dapagliflozin a day (I also take a statin everyday) to help with my heart failure and sugars levels.
Just over a week ago I reduced Bisoprolol by 2.5mg as guided by the GP so as not to shock my heart with too much adrenaline with a leap or sudden withdrawal. She said we could then do this for a few weeks and if all is well reduce it further to 5mg but never lower than that.
Today I’ve had to make the decision to go back upto 10mg a day. My heart rhythm went constantly and noticeably irregular, my energy levels didn’t increase at all and I’ve been unable to sleep very much, I’ve actually felt worse than before.
Has anybody else encountered similar?
Two years ago I was free of ever taking any medications at all, now I am taking statins, glucose reducing pills, beta blockers, inhibitors and fluid pills….I’ve realised that this is quite possibly a way of life now, weight gain and all that accompanies it.
If anybody has any similar experiences I’d love to hear about them, from the weight gain to any weight loss and everything in between.
Thankyou to you all.
Wishing wellness to all. Deborah X
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Glastonburylady
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What a well written and informative post you have sent us and the questions it opens up for not just yourself but many others.
I really can understand some of your problems and they mirror some of my own, one of them being the weight gain which I had mainly put down to not being so mobile as before, but am also realising that certain medication is also playing a part.
I must admit that as the scales began to move in an upward direction I was puzzled because I thought that I had compensated my calorie and volume intake for my lack of exercise.
But a quick question fired off to my heart nurse and she said that it really is a common side effect, her main worry was that it was not water retention { for all the obvious reasons } which some of mine certainly is.
I am lucky that being long term vegan that I prepare all my food and yes that is from fresh stuff as its so much cheaper than processed stuff { have I been tempted by a vegan pork pie? Yes of course I have until I read what’s in it ! }
Between the lines of your post I read with sadness how this has affected your mental health and can only ask you to please try and get some help for it, I realise that the extra weight is not helping your situation, nor is the fact that you are now dependant on medication.
But there is help out there you have to start the ball rolling with your DR/Heart team.
Take care and thank you for being so honest with your post, It certainly made me think.
Hello and Thankyou for taking the time to connect with such a caring and kind response. We do have similarities, I’m a long term pescatarian and also cut out calories to compensate for meds, it just doesn’t work does it. The weight accumulated and the more we do makes do difference other than to cause exhaustion.
You’re right about the mental health aspect, it’s really quite debilitating. I have sought help but ultimately nothing can help me to feel ok about this weight gain but my own mindset and feelings of being in control which realistically I am and I’m not, I can’t control the things the medications are doing to me but I can control my thoughts.
I shall work on it, I use mindfulness techniques and my own kind of meditations.
Part of that, well, most of that, is to be quite solitary and that way I am feeling less self conscious and calm. It is a necessity for me.
It’s disappointing when medical staff have telephone discussions with us and patronise by suggesting high sugar levels and cholesterol are due to lifestyle and sent any connection with meds…. That upsets me more than anything. The times I’ve said ‘I eat healthy foods, non dairy, no meat, plenty of seeds and salads and they come back with comments like ‘but it’s what you eat that makes the difference and a lack of exercise…. Wow.
Before these medications I was totally healthy with normal blood results, sugar levels and Cholesterol, I was at the low end of the BMI scale bordering on the underweight.
They may as well have put me on a cocktail of mars bars doughnuts and fried foods, the weight gain has been equalled to that, but I know it is the medications causing it all. I’ve had female doctors listen to me and then say ‘are you doing any exercise at all as you must try to move around….’ You don’t say! Try moving around when your body’s metabolic rate is being murdered slowly by medications and a three mile walk a day on 700 calories of salads and protein won’t even lose you 2lbs of fat over a period of two months, all it does os cause muscle pains and an inability to do much else, the conflict going on within my physical body is alarming.
Yes, we are grateful to still be alive and relatively healthy but what a trade off to deal with!
The heart failure nurse team here were ok at first but quickly go off the boil and as one said to me ‘they have more important cases to deal with….’ So ultimately we must soldier on and take the reins however we can hold onto them.
If it wasn’t for the medical teams that I’ve dealt with over the years missing the fact that my heart was too weak to pump by putting it down to my age, hormones or rushing around I wouldn’t be in this mess anyway.
I lost faith long ago to an extent.
We are just a couple more statistics of being shunted through a system being ignored so they keep in a job and we are the next out the door. To be ignored until we cannot ignore our symptoms and then they can acknowledge us. Why oh why does it have to get that far.
Rant over.
Hoping you are as well as you can be and that you have a super weekend X
You rant away as I know that it helps, thank you for putting your words into print because it is so important that all fractions of our illnesses are presented, and I know your words will be valuable to a lot of people
So very sad to hear the response of your Medical/Heart team over your diet and medication concerns. I am lucky there as I have an extremely knowledgeable and concerned Nurse and cardiologist.
Having said that, during this { almost } year of pushing and pulling, cutting and sewing I have seen my fair share of so called professionals that seem to just want to drift through their work day with the slightest amount of input, for me that can be very annoying and frustrating because I want to know everything I can about what is happening to me.
Please continue with your excellent input to the forum, I for one will be following your story with interest.
And know that you are not alone { even if you want to be }
I can understand how you feel, especially about weight gain. I’m recently diagnosed with 2 heart conditions, neither of which I’d be aware of if they hadn’t been found quite randomly. I felt fine and my weight was a healthy one.Now I’m on pills that make me feel sluggish, I’m putting on weight (although this is mostly due to overindulgence caused by fatigue and depression) and I’m depressed.
In other words, I felt better without all this stuff that’s supposed to be keeping me well. On a day to day basis I was better off before.
And all this without once sitting down with an expert in the field. Several phone conversations with various GPS at my practice; an echocardiogram done by a technician; a report generated by a computer.
Last week I paid to see a cardiologist privately. This man examined me thoroughly, explained the situation, reviewed my meds and told me to come off the Bisoprolol. It cost about the same as having 2 new tyres on my car or taking the family out for a meal. I recommend it.
I now feel someone is, literally, on my case.
To see a cardiologist on NHS I’d have to wait a year and then I doubt I’d have got so much of his time.
I have never posted on this forum but read it avidly every day.
I was amazed to find someone who was experiencing similar feelings to my own.
In a nutshell, I was admitted to hospital 2 years ago, barely unable to breathe. It transpired that my lungs had fluid in them and I was put on frusemide, but kept in the heart ward and umpteen tests were taken. I was told I had heart failure, my EF was 35% (moderate to severe) and was prescribed Bisoprolol 2.5mg twice a day, ramipril and kept on the frusemide. Some months later, the heart nurse became involved. She has taken me off ramipril and substitued Entresto 49/51 (middle dose). Also removed frusemide and substitued with Spironalactone.
I was so tired and breathless with no energy, but with Covid lockdown, I didn't do much anyway. However, now Covid has come and gone, I cannot do what I used to do at home. I mentioned this to the heart nurse but she said it just sounds like normal heart failure. Having read so many posts on here and the majority vote seeming to blame bisoprolol as the culprit, I insisted on reducing the dose to 2,5mg daily. Still very tired, so with GP's consent, I have reduced dose to 1.25mg daily and I don't feel as tired.
Over the last 3-4 months, I find my breathlessness worse and have been suffering from heavy aching legs and cannot walk more than 50 yards before I have to sit down for 10 minutes to relieve the aching legs. The lower backache I suffer from came on 2 years ago, after being discharged from hospital, and seems to be worsening.
Can it be the medication? The GP doesn't appear to be concerned about it. I have put on 2 stones in weight over these 2 years and this too gets me down. I had a well woman yearly check up a couple of weeks ago. The nurse, very kindly I would add, advised me to lose some weight, cut out the carbohydrates and try to reduce cholesterol level of 6.1, So I have cut out the sugary things in my diet, ie cakes and biscuits, only eat Ryvita and cottage cheese instead of sandwiches and processed meat with mayonnaise, all to no avail. I have lost no weight!!! I cannot even exercise by walking the dog as I am in such discomfort. And so I empathise with you 100% about diet not having any effect on the weight gain. But those medical people will not hear of it, causing me understandable frustration. I have never been this weight in my life.
Take good care and keep on fighting the fight, I support you totally.
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