Heart failure with Bipolar or Mental health issues ? I've reached max tolerated Entresto EF still low need advice on CRT-D Pacemaker

[Stuart_scharcarnie]

Hi sorry its been such a while since I posted on here, I had an echo done in May which revealed EF of 25% I was told I had severe LVSD, cardio told me I would be referred to the community HF team, I've since been going fortnightly, was put on Spironolactone, Furosemide, and Bisoprolol was increased. My Cardiologist suggested Entresto I started on the low dose, increased to middle dose of 49 / 51mg which I've been on a month or so I didn't really have any side effects just tiredness and occasional dizzyness, anyway just had another echo and it's only increased it to 33% I know that's better but I've been told I've reached my max tolerated amount of Entresto I feel so down about it I've really tried to alter everything in my life stopped smoking etc and lost weight I think I just expected it to improve more, it does for some people I suppose, it doesn't help that I suffer with bipolar its all really effecting me ATM. I'm certain my HF nurse said I would qualify for a CRD-T pacemaker I'm so worried about this, has anyone got Mental health issues and had one fitted? or if anyone can give advice if you have had pacemaker do they make a difference? Many Thanks

[10gingercats]

This is just an idea. I do not have a weight problem but I wonder if you are saying you have lost weight and meaning SOME weight or have you perhaps not lost as much as is advisable for your heart condition? Being overweight does seem to be a significant factor in heart disease which is why I mention it.

[Stuart_scharcarnie in reply to 10gingercats]

Thanks for your reply but it really doesn't answer my question yes I have lost Some weight maybe I do need to loose a little more, but my weight is not the issue.

[Hidden]

Hello

Sorry to hear about how much you are struggling

I have had 3 heart attacks and now a triple bypass and I know that is not the same as you but I really suffer very bad with agoraphobia , PTSD , severe anxiety , depression , OCD to name a few and have done all my life

Since taking ill with my heart it has made all these things worse , I thought they were bad enough and could not get worse but they have and I am really struggling

I know heart conditions are bad for anyone to deal with but when you have Mental Health issues to I do personally think it takes it to another dimension and makes it even harder

You need to speak out even if you have already make sure you are heard by your Cardiac Doctors , own GP etc

I feel dealing with this alongside my Mental health has been the biggest battle I have faced getting people to understand and listen and it has worn me out but slowly they have started to listen and once they do it is a relief

You are not on your own and members will come along and answer more on your heart condition and what you need to be doing in that respect but I relate dealing with Mental Health and been unwell

I hope you get the support you need and deserve x

[Stuart_scharcarnie in reply to Hidden]

Thank you for your lovely message it is extremely difficult you're right, sorry to hear what you have gone thru also! I was diagnosed with Bipolar in 2014 always suffered with mania, anxiety and depression since my teens I'm 45 now, over the past few years my social anxiety has gotten really bad I will do anything to get out of going out etc. Since being diagnosed with HF I'm even worse I'm petrified to go out when anxiety is really bad it brings on panic attacks and what feels like Angina. I've blacked out on a few occasions falling and hurting myself so I don't go out alone now, the mental health team just keep telling me to take promazine before going out which dopes me up. I am unable to work due to what's been going on, I've got an app with Psychiatrist and am going to see if they can help me surely theres other meds I could take. Hopefully a CRT-D will help my heart which in turn will help my Mental health. Once again many Thanks I'm so pleased ur mental health team are listening to you finally Regards Stuart x

[Hidden in reply to Stuart_scharcarnie]

Hello

I also understand that sometimes the answer to them is to just put us on meds that are to strong and I have often wondered if they do this to make it easier for them not us

But you have every right to speak out tell them how you feel and disagree if you feel they have got it wrong and it is not helping they may not like it but this is your care and you should have a say in it

I will keep everything crossed that this Psychiatrist can help

I know they say that Mental Health has moved on and yes to some extent it has but they have still a long way to go and unless you suffer so many have no clue dealing with this alone how hard it is

Let us know how you get on x

[Stuart_scharcarnie in reply to Hidden]

Thank you so much for your thoughts I can relate to them x I will let you know how I get on many thanks take care x

[Spetses in reply to Stuart_scharcarnie]

My husband does not have any diagnosed mental health issues but is off the richter scale on anxiety (cause of most of his cardiac problems ) but he did have a CRT-D fitted 4 years ago for his heart failure ,it helped considerably , but as mentioned you also need to work on losing any extra weight & exercise once possible ,.We found exercise improved his E/F profoundly once he was able to .Good luck in the meantime for anxiety issues try yoga/meditation ....

[jowalk6]

Hi Stuart, so sorry to hear what you're going through. I had an ICD implanted 7 years ago after an SCA at home. After 9 days in ICU on a ventilator and a month in hospital they decided I needed an ICD. I have suffered on and off with depression and anxiety. Nearly 3 years ago I ended up being blue lighted to hospital again. This must have brought everything back and I was in a mess, I was diagnosed with PTSD. I know it can be a hard lonely place with mental health. I was given medication but I also did CBT and then EMDR therapy. It was really hard at first but it really helped. Sorry about the long post. Take care x 🤗

[Glastonburylady]

Hello Stuart.I’ll try to keep it brief and answer your question.

1. I do suffer with mental health, ocd, eupd, depression, social anxiety and other things all diagnosed.

2. I have idiopathic cardiomyopathy heart failure, both lower ventricles are stretched and weak with some weird arrythmia alongside, diagnosed March 2021 when I suddenly encountered unnatural breathlessness.

3. Was put on furusemide 80mg a day, ramipril 10mg a day and Bisoprolol 10mg.

4. My weight has increased causing all kinds of misery and depression. I’m not obese but 2stone 10 heavier and now a size 16 not 12.

5. I feel exhausted a lot.

6. Now I’m also on metformin for high glucose levels NOT related to weightgain as I’m still in a normal BMI level, diabetes is hereditary for me.

7. When I was on meds alone my EF rate was 16% and still dropping.

8. Had a CRT-D fitted August 17th 2020.

It’s amazing!

My EF is now around 45%.

I still have to take the same meds for some reason, my weight is still increasing because I’m less active and they slow down my metabolic rate which causes me misery and I still feel very exhausted a lot but it made a huge positive difference.

So I’d say don’t worry unnecessarily regarding having one if you’re offered one.

Your EF isn’t dangerously low and even when my EF was 16% I was functioning ok, I’ve never been hospitalised.

The increase of EF means I don’t get as out of breath as before and the arrythmia isn’t nearly as bad. The meds as well mean my migraines have diminished as well from about 3 a week to one every three months.

They have spoken of changing my meds to a different brand or type but my heart failure team aren’t the best with communication, action or follow ups.

Try not to overthink and know that a crt-d is a painless procedure and a valuable little device that really can help. I think 2 of 3 benefit from them and I was lucky.

Apparently EF varies hugely between people and what one can function well with another can’t. I also worried about mine as you are too.

I hope this helps and try to distract yourself whenever you can with nature, gentle walks and focus on your breathing…. Wishing you wellness X

[Arrowe]

Hi StuartI’m sorry I can’t comment on your current concerns as my medical history is different to yours.

I did, however, have a pacemaker fitted last November and have been so pleased with it. It hasn’t given me any problems.

In view of what you have said about your mental health I would suggest that you request sedation should a pacemaker be fitted. Some hospitals offer it as a matter of course, others don’t.

I had mine fitted without any sedation and it was very traumatic.

[Enonykasper]

Hiya sorry to here you are struggling I have hypertrophic cardiomyopathy

So I have a CRTD from 26 /4/21

So it’s quite new

I didn’t want it and was terrified

But now I have had it 4 months it has given me so much confidence

I hope you get sorted soon so that you don’t have to worry so much as it surely doesn’t help you 👍🏻👍🏻

[Enigma63]

Hello Stuart,

I'm sorry for your suffering.

I have a history of depression. I have dilated cardiomyopathy with heart failure. I have been told I am a good candidate (ie likely good outcome/improvement) for CRT-D Pacemaker, but I am unable to have it for a number of reasons, which is difficult to deal with, especially as my daughter is still very young.

My cardiologist says Entresto can be expected to roughly improve EF by about 20%. I see many people here have higher results, which is wonderful.

In my case, I improved from EF <29% the EF <36% (24% improvement) in about a year when on the maximum dose of Entresto. It remain there for about 4 years. After a year of lockdown (self-quarantine) I had my annual check up which showed a further 10% improvement in EF! I put that down to reduced stress as I no longer go in to work to mix with toxic co-workers.

My EF has plateaued. I am always tired and dizzy but I accept that because Entresto has remodelled my heart and is keeping it there (for now).

I wish you all the very best.