CHF and health anxiety

[Georgeygoose94]

I’m 30 and was diagnosed with congestive heart failure just over a year ago. It took a year to get to the top dose of entresto but I’ve been doing really well in myself, walking the dog almost every day, much more active, working full time etc. I had an MRI last November which showed an improved EF to 34%, up from <10% in the July, so when I had an echo in September I was expecting something out of the heart failure range.

Results from echo showed 26%, and I’ll be honest, it really knocked me. I’m being offered an ICD which I was really hoping to avoid for a while and I’ve got no chance to speak to my cardiologist about this until January.

The last 2 weeks have been rough. I’ve had 2 occasions where I thought I was having a heart attack and have had to leave work in the middle of the day to go to A&E. Yesterday I had to abandon my car to go because I thought I was going to collapse behind the wheel. Both times, all my tests came back fine - there’s nothing physically wrong. So it looks like I’m dealing with psychological symptoms, which honestly scares me almost as much as physical ones.

Has anyone else experienced this? If so, what helped you get through it? I can’t keep showing up to A&E every week, it’s upsetting and a waste of NHS time, but equally how do I differentiate between this presentation of anxiety and a real heart attack, which is still a risk for me? Any tips would be appreciated.

[Bumpitybump]

You already have great self awareness and I admire you owning the possibility of a psychological issue, what about talking therapy, counselling or whatever you want to call it. NHS now offering more talking therapies than they used to, you maybe able to self refer in your area, ask at GP. All therapies will be aiming to give you more control over your emotions, including anxiety. Best of luck.

[Georgeygoose94 in reply to Bumpitybump]

Thanks for your reply ❤️ ironically I work as a therapist in nhs mental health services. I’m on a waiting list for psychology and have been since last December so hopefully getting closer to seeing someone, but I think I’m going to try and do some techniques at home while I’m waiting to see if I can get through the worst of it. Appreciate the advice and support x

[Bumpitybump in reply to Georgeygoose94]

It is interesting working as a therapist isn’t it. Spend my day helping people to access their parasympathetic side of their autonomic nervous system and then fail to get my self to do the same 🫣. Good luck with it all.

[Shihtzumum79]

Hi there I also have heart failure and my have had anxiety all life. I am very similar to your experience

My infraction injection is 26% at my last mri I am also on entresto valsatan. Waiting for mri to see if it’s gone up from that percentage. I also have had Hospital admissions twice in the last 6 months where I was convinced I was having a heart attack and haven’t. So I empathise and completely understand.

Anxiety can make you feel similar symptoms of heart attack. It’s difficult to tell the two apart sometimes. But do you have a bp machine at home and you can check your stats? Maybe helpful to see what’s going on. I always check mine if I’m worried and go from there. Do you have a cardiac nurse you can talk to or contact the nurses on bhf they may have some good advice?

The a&e consultant said that a heart attack you having a crushing pain like an elephant is sitting on you, clammy, sweaty, breathless, feeling sick, pain in back or down arms. I had chest pain only and was extremely anxious.

The icd I understand how you wanted to avoid it and maybe just have medication but think of it as piece of mind if your heart goes dangerously out of rhythm it will put it back again with ease. I know it’s all scary and so much to worry about.

Could you ask if you could speak to a therapist or a counsellor to help with the anxiety and psychological side of things again your cardiac nurse could recommend possibly.

Hope this has been helpful and not me rambling

I wish you all the best and praying all settles and you get to a good place again

Clare

[Shihtzumum79 in reply to Shihtzumum79]

A support site just for heart failure I can recommend is called pumping marvellous lots of advice and forums on there! Maybe helpful !

[Georgeygoose94 in reply to Shihtzumum79]

Not rambling at all, I appreciate not being alone in this!! My dad actually has pretty severe anxiety and before he retired he used to think he was having a heart attack at work (he has no cardiac issues) which is one of the reasons I’m thinking it’s anxiety-related now my tests are all normal.

I’m waiting for therapy at the moment, sadly nhs waiting lists are long! I might try and swing seeing someone privately but it would be tight. A lot of the symptoms happen when I’m driving so I feel like I’m going to collapse behind the wheel, which is terrifying as I drive a lot for work.

Thanks for your advice and kind words ❤️

[TheMiloKid in reply to Georgeygoose94]

Can you listen to something meditative in the car? Classical music is supposed to soothe the soul. I had a pacemaker fitted and then diagnosed with an aortic valve regurgitation which I eventually had surgery on. At work I had pains and took myself off to A&E twice I think. The doctor told me to never ignore chest pains. I thought it might be angina but it wasn’t. Does your area have a local heart health group? It’s good to talk sometimes to people who understand what you’re going through. Good luck on your journey

[PadThaiNoodles in reply to Georgeygoose94]

I did CBT privately and don't remember it being particularly expensive. It was admittedly a long time ago....

FWIW, I did find it very helpful.

[Qualipop in reply to Shihtzumum79]

That A&E consultant needs educating urgently. I wonder how many heart attacks he's misdiagnosed. Crushing pain is far from the only symptom of a heart attack. I had absolutely no pain. I had 3 days of terrible indigestion and slight tingling down my arm and up my neck on the third day. Absolutely nothing else. I was therefore, left on a trolley in a corridor for 8 hours before even a troponin test was done because the triage nurse didn't recognise the signs and ignored the paramedics comments about my ECG.

[jayjay10000 in reply to Qualipop]

Iam really sorry you had to go through something like that, are you ok now.

[Qualipop in reply to jayjay10000]

Yes fine thanks. It was now 6 years ago. October 2018. I put a complaint in to the hospital because not only was I left but the corridor door swung shut and locked so I couldn't even speak to anyone or get to the loo. They insisted it didn't take so long but the ambulance got there at 10pm. the nurse who ignored me came 15 minutes later and asked if I'd like an aspirin then it was 6am before I saw anyone else. blood test done, results back at 2pm and into a cardiac room on my own and hooked up to monitors at 3pm; so 13 hours in all.

[Georgeygoose94 in reply to Qualipop]

Thank you for sharing, and I’m sorry you had to go through such a horrific experience. To clarify, I had all the testing done and it was all clear before my A&E consultant suggested psychological symptoms, and he didn’t rule it out completely - I’m very sensitive to this as my heart failure was diagnosed as anxiety when I first became unwell, leading to no testing or anything so I’m quite vigilant now. I’m concerned it might be an issue with my ventricular ectopic and have a 24-hr ecg booked in a couple of weeks but I’m just worried about my ability to get on with work and life before they can figure out if it is

[Qualipop in reply to Georgeygoose94]

Anxiety certainly does come into it. I'm sure even the most resilient of people worry about their heart problems but as you say it should never be thought of as the first approach. Testing should be done. I'd spent several years complaining of breathlessness and had a strong family history of heart disease yet my g P simply blamed it on my damaged spine and muscle spasms. I admit to having health anxiety but it's not the cause of everything and I can tell the difference. Women especially often get fobbed off with anxiety or menopause and it's wrong. The ONLY person who ever asked about family history was a newly qualified doc at the urgent care centre, about a week before my heart attack. He booked an urgent stress test but the HA beat him to it. My GP has since genuinely apologised for not investigating. Never assume! Get the tests.

[jayjay10000 in reply to Qualipop]

What Hospital were you in? The problem is when you have to goto A&E with chest pain or chest heaviness you still have to wait in the waiting room, I had the same experience, when my chest felt really heavy, didn't get to see anyone to explain what been going on for 20mins, I didn't get a bed in ED until 8 hours had passed chest pain is the worst 😢

[Qualipop in reply to jayjay10000]

I'd rather not name the hospital. Didn't even get to the waiting room. It and all corridors were packed full. Ambulance men did stay with me until the ignorant nurse showed up but then had to leave. I'm sure they forgot I was the only one on that corridor. I can't walk so I didn't even see anyone who could push me to the loo until the day shift came on.

[BobbyCollins]

Hi thereSo sorry to hear if your problems.

I have had issues with high blood pressure and the stress of it all gave me panic attacks. I didn't realise what they were and kept going to a & e referred by GP and 111. No obvious issues but when visiting my sister the same thing occurred and I visited a & e there where the diagnosed panic attacks. I got some beta blockers for this which really helped and only take them when completely overwhelmed but now I understand it all a bit better it doesn't happen very often. Hope you get sorted because I know it makes you feel terrible. Good luck

[Georgeygoose94 in reply to BobbyCollins]

Thanks, and sorry you had to go through that. It’s odd because I’ve had panic attacks sporadically for a while, they often feel different which is why I’m not so sure. Glad you’re managing better now and I appreciate the support and advice

[BobbyCollins in reply to Georgeygoose94]

Take care it's hard not to feel bad about these things people don't seem to understand. I note the talking therapies mentioned I think I will look in to that too. All the best x

[jayjay10000]

My words of experiences.. Don't ever think you are wasting NHS resources when you need to use A&E (ED) over your heart issues, you only have one and it needs to be looked after. My thinking was the same as you for most of last year and this year. I have Aorta root dilation and ascending and was told this back in March 2023. I have lost count how many times I have been to A&E by Ambulance or been taken by car think I was going to die, from very fast heart rate or from chest discomfort, tingling sensesation down the arm, clamy or feeling faint. I had the same experience as you when being out and about, feeling faint and jelly legs is top of my list, followed by chest heaviness, shortness of breath, I didn't realise what was happening at first but now I have been diagnosed with chronic Anxiety disorder and panic attacks. I would not wish this on anyone it's horrible. My advice is get an referral for talking therapist, they have along waiting list, but it is worth it. You get 6 sessions usually 1 aweek. You can talk to them how you are feeling and what is happening when you are out [ feeling like you are going to pass out ]. Do you have anyone you could talk to apart from family, talking about what you are experiencing will help to get things in the open or you could write your thoughts down on paper, [ that didn't work for me ] but could help for you, try not too use the Internet to look health things up, I said try, once you start to try you start to look up things less. I did this all the time and it made my way of thinking worse. Take care

[Georgeygoose94 in reply to jayjay10000]

Hiya, thanks for sharing and I’m sorry to hear about your experience, it sounds terrifying. I think you’ve got a solid point on googling the symptoms, unfortunately I still do this way too much!! I’m very lucky in that I’ve got a good support network and I’m a therapist myself so all my colleagues are mental health professionals, I’m on a waiting list for psychotherapy but it’ll be a while, I’m going to see if I can source something privately if I have the funds. Thanks for your advice, it’s really appreciated

[Franks-Nan]

while we are telling each other scary stuff i will tell mine, back in the summer all was quite in my house when i went to the loo and weeed out something that looked like black coffee, panic mode set in i went hot sweaty and i could feel a panic attack coming on. I rang my daughter telling her im gonna die, she came round and all i wanted was an ambulance and paramedics to monitor my blood pressure and have a ECG to reassure me. Ambulance came and said my AF was going bonkers because of my panic. I get to the hospital, i could not walk because i was so frightened. I had to do a water sample, i could not even do that i shaking so much, a nurse helped in the end, she was nice, she said i think i know what this is, leave it with me. Well i had to have a ct scan of my bladder and kidneys, it turned out i had a very tiny kidney stone, but because i am on apixaban the stone caused alot more bleeding than normal. i was expecting alot of pain passing the stone but they gave me medication to open me up a bit and i think i passed it a few days later. I never want to go through that again. I do suffer with mental health stuff and can go way over the top regarding my health, i have got worse as i have got older. I would do anything to feel normal again and enjoy life, i do try, trouble is i do not feel safe within my body since my HA and AF, i try gratitude for my life, sometimes it works sometimes it dont.