Is there any advice you have received about your condition that would have been valuable to know at the time of receiving the diagnosis?

23 Replies

  • Nothing was explained to me the doctors just fobbed me off with remarks like don't worry etc

  • I would like to have known more about the side effects and long-term negative effects of medications prescribed, particularly fleccainide and Eliquis. Also blood pressure med.

  • That SVT isn't likely to be fatal...

  • I was given no advice at all on how to manage the condition. The only recommendation made to me was to take aspirin. I did not realise that prolonged episodes lasting more than 30 minutes should have caused me concern. I lived with episodes for days at a time and became gravely ill. Even now, I can be told information about my condition on a very incidental basis, and certainly not in a planned way. An example of this occurred a few weeks ago. I had a pacemaker fitted last year. I had started to struggle again with symptoms several months ago. When I enquired about my settings at the pacemaker clinic, the technician informed me the heart was in permanent AF, and nothing can be done. Brutal. This should have been a discussion at the point I had the device fitted. However, the state of the NHS in Scotland is terrible at this point in time. I'm seriously considering going private.

  • I would like to have known how to use the monitor before being given it rather than afterwards the doctor's were/are of no use to me before or since I was diagnosed. I have a resting hr of 30, and at peak exercise tops out at over 200, yet it can often miss beats or put in a fare few extra ones for no reason at all. As my useless doctors are currently treating me for chronic Lyme's disease, yet it has taken me twenty years of badgering them to get them to treat me. I am only allowed one "illness" at a time at my surgery!! As chronic Lyme's antibiotic treatment should go on for many months, if not years, I have to source my own doxycycline as the doc has given me three months worth so far over the past five months.

  • I was given valuable advice about warfarin from the specialist nurses but nothing about AF from the consultants whilst I was in hospital. I was scared but didn't understand anything

  • I can only recommend if you can afford it to go privately, as the care & Consultants you get are fabulous! This is concerning two Cardioversions & an Ablation. I have read up on my condition, and met many lovely people whom have helped me! I have found taking Quercetin plus Bromelain (pineapple) have helped also, plus taking Magnesium before I go to bed, I try & drink lots of water, not get too stressed, plus exercise within my limits. Mostly you have to investigate it yourself.

  • Very helpful. Is the quercitin plus bromelain a pill? Are you talking about SVT

  • The difference between af and svt. The options of tablets, ablation or wait and see. Who to report any side effects to. Some form of after-care - ANY form of affter-care or professional to discuss anything with. I think if I had been on my own at home the results may have been disastrous as at points i felt suicidal and narrowly avoided a meltdown or major depression. Would definitely have went private if i had a bean to my name.

    And the fact there is a hole in my heart so i didn't find out by myself, even if it is small enough to be ignored. Finding out from my notes was frightening.

    I wish it all had gone differently, a bit of time and effort put into speaking to me could have saved me a tremendous amount of needless stress.

  • My diagnosis is AF and Mild tricuspil regurgitation..started with high blood pressure.

    Wish I had been told when I first went on BP meds to still get my BP checked as I discovered by chance that although meds did trick at first..this didn't continue.

    Most support and reassurance I get is from friends who have loss (probably warfarin and/or beta blocker} and tiredness is not taken seriously by professionals.

  • All I have been told is not to worry, as I am the right medication , Bisoprolol and warfarine. Never had anything explained about warfarin and diet either. Was left up to me to find things out via the internet.

  • I had problems with chest pains and a host of other things. I was told it was nothing. I finally got an Echo done. The nurse said that he was sorry to inform me that I had heart failure at the worst level and AF.

    No explanation, no leaflets, no advice at all! I went home wondering what it all meant. I got straight on to the computer and started doing my own research. I was scared!

  • It won't kill you

  • When dianosed in 2010 with PAF it wasn't fully explained that I ran a risk of stroke. I was prescribed daily aspirin, but didn't fully understand why so didn't take it often as it upset mystomach.

    In 2015 when AF became persistent the GP did explain the risks but was in no hurry to prescribe anti-coagulants. Only a private visit to a consultant put my straight on this.

  • My diagnosis was casual and unhelpful. Since then I have discovered a lot more about handling the disease, atmospheric and temperature impacts, handling exertion and more. Until I was seeing clinical practitioners (ie NOT GPs) I got very little good advice. Indeed it is only now, five years on, that I am booked for pulmonary rehabilation which I did not even know existed until four weeks ago!

  • I wasn't given much advice after my admission to A&E, other than SVT isn't fatal.I got most help and advice via this site and a couple of months later I saw an arrythmia nurse who explained everything. It was a bit too long to wait, in my opinion, and I did worry a lot in the interim.

  • I was not given information about the condition or how to help myself . i was told by a consultant all your problems are caused by smoking . wow real helpful i am still living with the devil inside me and its like treading on egg shells the attacks are very scary .i am housebound . Thanks NHS if i had money to go private i would .

  • It's so sad to read comments on this site (not just this post) about the psychological aspects that are unheeded with this condition, and how it is exacerbated by not being treated like a human being with feelings and natural concerns - i wish someone would get some sort of petition together along these lines - any problem with your heart is going to bring up anxiety and fear - and the very thing we are told to avoid - stress. Surely there is a better way of dealing with this than a lot of us have suffered? I have thought of complaining but would like to do it in a way that will count, not targeting specific individuals (although that took a while to dissipate after disgraceful treatment by someone) - has anyone any ideas on this?

  • My cardiologist told me I had an arrhythmia and suggested medication to help with palpitations. He prescribed a beta blocker (metoprolol) 25 mg.daily. Also use an 81 mg aspirin daily. I have not had any palpitations since October 9, 2015.

    My cardiologist sent me to an electrophysiologist for an evaluation. We talked about an ablation. He said I did not need one because I am doing so well on my medications. He suggested I have a loop recorder implant. I agreed. It was implanted April 19, 2016. It is working well. He can monitor my heart and arrhythmia 24/7 using the loop recorder. A report is sent to him monthly.

  • The SVT that I was suffering from COULD possibly kill me because after the fast rhythm, my heart would basically stop and I would pass out anywhere, anytime with an underlying undiagnosed blood disorder that was not discovered until the second ablation when they sent me home with a PE in my lung because NO ONE WOULD LISTEN to me when I said that this does not feel like first one. Then they don't tell you about the difference in sexual functions and orgasms. No one wants to talk about that! Especially if you have had two ablations. So your heart can only beat so fast. If done properly, the nerves around the heart are tabulated and can't function. Well, they don't tell you about scar tissue, when I lay on my right side can't breathe due to scar tissue around the heart. Can't due anything about that because it will just create more problems. Still have SVT not as.frequent - will have to wait until menopause and hormonal changes. BUT ON THE BRIGHT SIDE I DON'T PASS OUT ALMOST EVERYDAY WHICH IS A PLUS AND LABETALOL HELPS WITH RHYTHM. I AM ALIVE, BUT YOU HAVE TO FIGHT FOR YOUR HEALTH CARE!!!

  • That I do not have any real heart problem but just need to supplement with minerals and specially electrolytes like potassium, magnesium, sodium. And calm my adrenals with Holy Basil because my adrenals glands makes too much cortisol and that makes my heart run wrongly. Since I started doing it, I do not need any B Blockers anymore. I dont have any rhythm problems. I wish somebody told me that 6 years ago. But at least now - I know. I recommend everybody to go to a good naturopathic doctor.