Is there any advice you have received... - Heart Rhythm Diso...
Is there any advice you have received about your condition that would have been valuable to know at the time of receiving the diagnosis?
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.
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 AF..hair 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
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?
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.
Wish I had been told that first two weeks in Bisoprolol can be a bumpy ride, but it settles down. It was very worrying as I thought my condition (SVT with aberration or NSVT.... still not sure) had worsened or that I was reacting badly to meds. After about 2 weeks, my small dose (1.25 daily) started working very well, so far.
Yes it was like first day at school and finding hard to understand all the medical jargon poppy storey
Yes it was like first day at school unable to understand all the medical jargon I still don't know what an episode is
Poppy storey
1 recorded incident of AF in A+E and I'm on Bisoporlol for life.Seemed very harsh.Was passed on eventually to my local hospital in Brum.Zero information given on my training and gym .Due to my meds lowering HR I could never get any where near my old HR.previously around 125/135 whilst training now lucky if I reach 90.So I just couldn't get info on The meds and exercise. Maybe I will pay for stress test.No coffee.and most of all Pre workouts are deadly.purchased at any healthfood store.All info ive received is from your good site or Google.
I've never known a condition that is so so vast in symptoms my brother in law has a new heart.He's well clued up.I have non symptomatic AF and feel I've been totally let down.Why is this so?
I just found a pacemaker was really played down and just get on with it attitude but in reality (at the time) I was petrified at being told I’d have one fitted within three weeks. I know everyone is so so busy but time for a chat to explain would have been a great help. I turned to google and YouTube for answers. Two years on I don’t think about my pacemaker
I received no information on ablation.
Everything I know I learned on line, and am grateful. As a result I know when to panic, and when not. I have known when my meds are an issue, and was clear when I was going to need a pacemaker long before my doctor suggested it. My doctor answers questions in detail and is patient, but noone
Offers INFORMATION!
At the time of my diagnosis for Atrial Fibrillation I had been having Paroxysmal AF symptoms for 4 years. Attacks lasted 2hrs and stopped of their own accord. My GP said it was nothing to worry about and didn't send me for investigation. This was between 2006 -2010.
The diagnosis in 2010 came when I had a massive AF attack before I was due to have a double mastectomy for recurrent DCIS, which is early stage breast cancer. There was concern I wouldn't be able to have the operation and that was why I was sent to the cardiology department.
I was then 60. I was given a holter monitor, an echocardiogram and a stress test. The report from the cardiology consultant to my GP said my heart was essentially OK, but I had Paroxysmal AF and also mild bradycardia , so I should take a daily aspirin, but avoid bisoprolol, and to take verapamil when I had attacks. It also said I could be referred back to cardiology whenever the GP wanted after the cancer treatment was over. They would be happy to see me any time, and would consider giving me Flecainide. My GP didn't discuss this with me. Nothing was mentioned about the danger of strokes. The aspirin gave me gastritis and I stopped it. Nothing else was prescribed. There was no mention of any of the risks from AF by my GP and no sense of urgency from the Cardiology department, so I did nothing till the AF became persistent in 2015.
At diagnosis in 2010 I would have liked to know about
1) The stroke risk with AF
2) Alternatives to daily aspirin for anticoagulation eg warfarin, apixaban.
3) The danger of AF becoming persistent if untreated.
4) The difficulty of treating persistent AF compared to paroxysmal AF
5) The availability of Catheter Ablation as a treatment
6) The danger of the heart Atria becoming enlarged if AF is untreated.
