Would appreciate any Hearties here who have been diagnosed with Hypertrophic Cardiomyopathy, with advice on the most effective medications to manage this condition. Not surgical procedures, just the meds. as surgery is not a viable option for me.
Interested to know about Bisopril- as I've just been diagnosed with HC - LV and this is the medication I've been advised to take, I haven't started it yet as waiting for the prescription to be sent to my GP practice. So far everything I have read about this medication has been negative, due to the side effects.
I had 3 stents last year, so I'm already on most of the meds for Ischemic heart disease.
Help please. Thank you
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WardijaWardija
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Unfortunately a lot of rubbish has been written about Bisoprolol on the Internet particularly in social media. Yes a few people have issues but millions have benefitted from it world wide. It does take a week or two to get used to it but it is worth the effort. Give it a go and let the forum know how you get on.
Hi I had dilated cardiomyopathy, and I took entresto, bisoperol, spironolactone, I am not too sure about the drugs for different cardiomyopathy's, but the cardiomyopathy uk website is very informative and they have nurses on their helpline that are very helpful it would be worth a phone call, I had no problems at all on the above meds I was on the lowest doses due to low blood pressure, I believe they can make a big difference, I have now had a transplant as I was diagnosed too late and ended up with severe heart failure, my fault,char
Hi. Thank you for your message and information. You sound like you have been through a lot, to end up with having a transplant - I hope it has worked out well for you.
I have infact spoken to one of the nurses, who was very supportive but of course cant tell me how the Bisopril will effect me until I actually start taking it. I'm praying that it will be effective for me, it's my last hope as I've been told that I'm too high of a risk for surgical procedures.
Hi doing ok at the moment, side effects from the immusupprestants and steroids are not too good but they adjust them weekly and they are settling down a bit, it was a bit of a shock up until three years ago I didn't even know I had a heart condition, hopefully onwards and upwards now, I hope they can find the balance of meds that will suit you and have the least side effects, take care char
Hi its a ridiculous story considering it was a congenital condition, I hadn't been feeling well at all so I decided I had sinusitis, 🤔got an emergency appointment at the docs and popped down to get antibiotics, I collapsed before I made the consulting room, an ambulance was phoned, two weeks later I got home, dilated cardiomyopathy, severe heart failure, in need of a transplant, ooft! So much for sinusitis, my fault I had just ignored how ill I felt for years put it down to old age I was 58, my dad died at 62, never even thought I could have heart disease, thought it was only men, we live and learn,thankfully my boys are fine that's the main thing now, char
Hi. Thanks for replying but I've never been told by my Cardiologist that I have Inflammatory Hypertrophic Cardiomyopathy. As you refer to my reducing my insulin, I would never change my 3 daily doses of Insulin, other than being instructed to do so on the advice of my diabetic consultant.
I just wanted to know about the medications other members are taking, or have taken to manage this condition.
Hi, I have HCM. I take Bisoprolol. I only take 2.5mg as it’s the max I can tolerate. The issue with me going higher is that I have low blood pressure and low heart bpm. It does make you tired/ wiped out to start, but that gets better with time. I’m happy on my dose, it’s not a problem.
I take bisoprolol for HCM. My cardiologist aims to keep my heart rate btw 50-70 for best cardiac muscle perfusion.
The only problem I found is the tiredness and as this tended to hit mid afternoon when I took it in the morning I’ve started to take my dose at teatime.
Hi Sarah. Thanks for your input. At the moment I can only dream of having a heart rate such as yours, I'm currently 80 to 90 and feeling most unwell. Let's hope the Bisopril will finally take it down. Take care and stay safe
Hi I'm on 1.25mg bisoprolol twice daily. When I started the tablet it made me very tired and occasionally a bit light headed but give that a few says and I wore off. Then when I increased the dose it did it again but again wore off. Otherwise OK. Its lowered my heartrate and also my BP. My bouts of svt are not so high atm. They were 196bpm and now approx get to 150bpm
Hi Milkfairy. Thanks for your message. Yes, it was a massive shock. Never ever would I had thought of HC. I returned to the UK in February and fortunately, as I fall within the catchment area of the John Radcliffe Jospital, in Oxford so my GP sent an urgent referral to them.
I was due to have an appointment in March, but this was cancelled due to Covid. Eventually given an appointment in early September, where I had a cardiac perfusion MRI. and it was from this, the diagnosis was made. I was also told that my 3 stents were working just fine.
Unbelievably, I had the very same tests in Malta, twice!! and HC was never picked up - in fact they wanted to add additional stents, go figure . . .
I'm now waiting to start 2 new medications, Bisopral being one of them. I cant recall the other one. Still waiting for the hospital prescription to be sent to my GP.
I'm wary of taking the Bisopral but my options are limited as I can't have any surgical procedures as considered too high a risk. So my fingers are crossed that the medication is the way forward for me.
I will let you and the forum know how it pans out.
Hi WardijaWardija - I too have 2 different pathologies (like you) i.e. ischaemic heart disease with clogged up heart arteries & hypertrophic cardiomyopathy. The first condition is advanced in my case, and the cardiomyopathy is early stage. Both labels have only just been given to me around 3 weeks ago so I am struggling through the denial-acceptance phases at the moment. And these labels came suddenly, without symptoms of either (abnormal tracings picked up on routine ECG in Aug)
May I ask you if you went through any genetic testing to confirm the hypertrophic cardiomyopathy diagnosis please? I am still trying to understand how HC is usually confirmed.
Many thanks, and I hope you eventually find the suitable bisoprolol doses that helps you and doesn't cause you unwanted problems
HI Cowgirl. Thanks for your message. Yep, it's a real pain to have both these conditions.
If you back-read my postings on this forum, you'll see how my heart history came to be . . . But in answer to your specific question, I can only say that the HC diagnosis was just a couple of months ago, after having a cardiac MRI done. As far as I am aware, this is the gold standard for HC diagnosis. Yes, it's a huge shock and even now I find it hard to believe that I've had this gene since birth - some 59 years. So I understand your thoughts and feelings.
I have never had any genetic testing, although it's an option, I can't see the point for me as I don't have any children or family who would benefit from my doing so.
Prior to my HC diagnosis and still to date, well at least to yesterday, I've suffered really badly with palpitations, dizziness, being unable to breathe and feel like I'm going to pass out - just doing simple things like bending forward to pick up something from the floor, brought these symptoms on.
I hope this information is helpful to you. Take care and stay safe. 🌹
Hi. As I recall, I had the scan mid. September, as should have been in March, but was cancelled and postponed due to Covid. I received my results 4 to 5 weeks later in the post with an appointment date to go back and see the Consultant, which I did 2 weeks later. So not too long given the year we're having, although when you're waiting it seems like forever . . .I guess right now, it may depend where in the country you are.
I was in hospital for 6 days after collapsing in work with chest pain and shortness of breath. I had ECGs, echocardiogram, angiogram, blood tests etc. They could a thickening but some of the tests came back as inconclusive, so I was released from hospital with a loop recorder fitted.
Two after coming out of hospital, I was unable to carry out simple daily tasks such as cooking, having a shower or even making the bed without being completely breathless and exhausted.
I had an MRI scan in October and have an appointment in January with the cardiologist by telephone.
I am now pushing myself to do things and I go forward daily walks. Whatever I do completely exhausts me but I am determined to keep going.
Hi again. Sounds like you're having a rough time. I think if any of my tests came back as inconclusive, I would speak with my Consultant and if appropriate, request the tests be repeated. Perhaps you could do this when you have your telephone appointment in January next year.
I can certainly sympathise with you on the exertion front. I had this too for 14 long months, 24/7.
But I'd urge you to take care and dont push yourself too hard, until you have spoken and taken advice from the Cardiologist. Your body will tell you when enough is enough, mine certainly did and I really had to pace myself. For me, walking was out of the question, just couldn't do it.
I had 3 stents put in last July for significantly blocked arteries, all went OK, and I was put on a whole raft of medications to go home with. However, after it was done I still had all the same symptoms, which I found very strange.
I went back to see my then Consultant, who just gave me a GTN spray for angina . . . and dismissed my concerns.
My symptoms persisted and like you, I could bearly do anything without getting breathless, palpitations, dizzy and feeling like I was going to pass out.
The spray made no difference at all ! All I could do was sit down and after 15 minutes or so, I would "recover" - at least till the next episode.
The quality of my life was really poor and as I have other serious medical conditions, I became really depressed.
To cut a long story short, I moved long distance and got referred to another Consultant Cardiologist at one of the top UK cardiac hospitals, who took my ongoing symptoms really seriously, and from this I had the perfusion cardiac MRI, which revealed that I had obstructive HC - the symptoms of which are pretty much the same as they are for blocked arteries.
The diagnosis came as a complete shock to me, never in a million years did I expect to be told that I had a genetically inherited heart condition.
I was even told that my stents were all working very well.
I was immediately prescribed 2 additional medications:
Bisoprolol 2.5mgs at night and Rythmodan Retard 250mgs, 1 every 12 hours.
I'm pleased and very relieved to say that these medications have really helped me and I'm no longer having problems after exerting myself doing everyday basic chores.
I haven't tried anything that needs a great deal of exertion as I'm mindful as to the risks associated with OHC.
Incidentally, when I was last seen by the specialist Cardio-Genetic Consultant, I had a risk assessment done as to the likelihood of sudden cardiac arrest and I was pleased to hear that my score was reasonably low, but still I'm erring on the side of caution.
I really hope that you'll get more clarity on your condition when you get to speak to your Cardiologist. As you won't be face to face, it maybe useful if you jot down the issues that are concerning you and any questions you may have, in advance, so that you have everything to hand, when the day arrives.
In the meantime take things easy, keep safe and take care of yourself and let us know how you get on 🌹
I really appreciate you taking the time to explain some of your experiences which has been very helpful. Prior to this I walked for an hour and a half a day and was fully focussed, stopped drinking alcohol and was on a very healthy diet. I had never felt so fit. I was taking 5mg of Bisoprolol for high blood pressure for the past couple of years and was absolutely fine , but the Consultant stopped this just before I came out of hospital, until they could get to the bottom of my condition. I have started writing questions in readiness for my appointment, thank you.
I shall update you in January following my telephone appointment.
I am fortunate that we are coming into the festive period which will take my mind off things.
Thank you again for being so supportive to someone new to this forum.
Have a lovely Christmas and I’ll catch up in the New Year.
You are most welcome 🙂. It's a whole new world isn't it ? But you're not alone, here you will find a wonderfully supportive group of "Hearties" and also you can call the BHF Cardiac Nurses if you need any further advice.
I wish you a peaceful and blessed Christmas and positive wishes for the New Year, and look forward to hearing from you after your consultation. 🌹
Thanks Julie. You are right in saying it’s a whole new world and it’s very good to know that there is plenty of support around. You’ve been an amazing help to me and it us appreciated. Take care
It’s been a couple of months and my telephone appointment was postponed. I received a telephone call yesterday to say that my telephone appointment has been changed to face to face and it’s tomorrow.
I assume that this is good news. I will let you know the outcome.
Yes, everything is subject to last minute cancellation right now. But I think it has worked out in your favour, as you're now getting a face to face consultation which is way better, in my opinion.I hope all goes well for you and you get the answer's you seek.
Well at last you know for sure now what's going on, and there's a treatment/device available for you that's hopefully going to make you feel a whole lot better.Do let us know how you get on. Take care and stay safe.
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