Today I've had multiple AF attacks which have rendered me unable to do my weekend job (first time its made me leave work early, and first time its happened properly at work, as the activity normally takes my mind off it). Its always the same story: ectopics followed by breathlessness, followed by a racing, irregular heart rate. I've taken a Bisoprolol and it seems to have helped, but I'm still on-edge, and still get occasional ectopics and chest pains, but I think that its gastrointestinal. Does anybody else feel as helpless as I do now? I have no idea whether there's something wrong with my heart, nor do I know whether my bloods are normal or not, and I won't know until 1st March. It really feels like there's something seriously wrong with my heart, and its affecting every aspect of my life now.
Its becoming too much to bear. - Atrial Fibrillati...
Its becoming too much to bear.
You poor soul - it's so debilitating and scary. Bob always says '3 things to know about AF - it won't kill you, it won't kill you and it won't kill you'. That said, PAF is such a misery because the episodes hit without warning and used to scare the wits out of me too.
Gastric upset - gurgling, bloating and gut trouble are known to sometimes accompany it, as is passing literally gallons of water during episodes. It is important to drink lots of water, so that you don't get dehydrated.
A cardiologist once commented to me that the psychological impact of AF is often not considered but that it is a burden we have because we've only got one heart and of course, we worry. I too worried myself sick at the start, convinced I would never be well again, but once I saw the right physician and got treatment, life did get better. You are very young and your EP (one of the best, you said) will be keen to set you on the road to dealing with your PAF.
In the meantime, hang in there, breathe and try to think positively - it WILL pass.
xx
Hi Finvola,
Thanks for your very thoughtful and helpful reply! It sounds like you've really learnt to deal with this horrible condition well. I've tried to ascertain triggers for my attacks, but I can never pin it down to a set of definite precursors, other than perhaps a lack of sleep and lack of food.
Sometimes the gastric trouble really does hit me whilst in an attack, very uncomfortable! When I see the electrophysiologist I will tell him about my gastric symptoms, and I've already started an AF diary, chronicling all my symptoms until I see him on the 1st. I am so glad I have such a reputable physician taking care of me. My mother (who's a nurse) told me that a cardiologist she knows is a colleague of the specialist in charge of my case, and according to him I'm in very safe hands. Its reassuring, but its still more than two weeks ago, and I don't mean to sound impatient, but I don't know what can happen in that time.
Thanks again for your advice. Hopefully the Bisoprolol will see me through until my appointment!
Micwal.
How upsetting this sounds. But AF is an electrical problem. It affects healthy normal hearts as much as it causes trouble for hearts that aren't as they should be. Neither can function properly when the timing is up the creek. You need to get the antics to settle and with proper help you will find a way that suits - as so many of us have been able to do.
Roll on 1st March!
You will overcome!!!!!
Re triggers. Look back over the previous 48 hours and not just the day in question. Be radical and cut out all the main triggers and see what happens. It could be a combination of triggers.
If you have vagal AF, then bisoprolol, which I think is a beta blocker, may not be the best medication. Research its side effects. Check out the recent posts on the vagus nerve and with this information, ask your doctor if this possibility has been considered.
I think we each need to do some research on AF to better understand and question what our doctors do to try to help us. We each know our symptoms the best and the doctor has only the equipment acquired data and his/her best guess at understanding what we are relaying. And if we lack some basic knowledge, the information that we provide could mislead the doctor.
Sorry to hear you are feeling so poorly and worried. I understand totally how you feel. If you are struggling to wait til first March could you or your family pay for you to see your ep privately, it is almost certain you could see him within a few days assuming he takes private consultations, you could still have tests and treatment on the Nhs thereafter.
The anxiety and worry is awful as I know only too well. The medics will sort you out and get you bavk on track. We all know that worry won't help but that iseasiersaid than done I know.
I do hope things settle for you. You will get your confidence back once you are on a treatment regime and gradually you will feel much better. Dig in things will improve.
Best wishes
I don't know how I would go about this. Is it a matter of paying the NHS or a private company? I don't even know who to ring to sort this out. I would be more than willing to pay to see the specialist earlier, as long as he had all the test results in front of him to discuss with me.
Don't get me wrong, I'm sure the professionals will get to the bottom of this and sort everything out eventually, but with my symptoms getting worse and worse with every passing day, the wait until I have the appointment with the specialist is feeling like a very, very long time.
All you need to do is ask your gp to refer you to the ep for a private consultation. You then ring the ep's office and say you have a referral letter from your gp and ask for a private appointment with him. It costs somewhere in the region of £200 for the consultation then tests and treatment can be done on the nhs thereafter.
My daughter was worried about a medical condition last week, we followed the process above and she saw the consultant the next day.
Not cheap but if it is getting you down and worrying you it's worth the cost.
Alternatively try calling your ep secretary at the hospital tomorrow and tell her how worried you are and ask if there is any chance of an earlier appointment or if there is a cancellation on the nhs. If not she could tell you if he does private work and will tell you how to go about it.
You will feel better for taking control of the situation rather than worrying your days away until first March.
If your af is really making you feel so ill you can always go to a and e they will check you over and do basic tests.
Take care, all will be well.
I'll give the doctor's secretary a call tomorrow! As for A+E, I've been several times, and mostly they just observe and monitor, so I don't see the benefit in going again unless my symptoms take another turn for the worse.
Thanks!
Micwal.
Don't go to A&E yourself. Call 999 because then paramedic will do ECG and other tests when they arrive at your home and issues may have disappeared a few hours later. I did that and ECG by paramedics and hospital (at 3.30am) picked up branch block problems which weren't there on heart hospital's ECG two weeks earlier and gone back to my usual state when next ECG was done a few hours later. However they were able to identify issues because of that.
Hi Peter. I rang 999 when I was first diagnosed in November, they arrived very swiftly and conducted several ECG tests in my living room. Later on, two cardiac nurses examined the ECG's with a doctor and detected Afib on them. These readings have been sent to the EP who will talk to me about them, as well as all the other ECG's I've had, when I go to see him on the 1st.
Best,
Micwal.
Great. That's what you need.
And if it happens again between now and EP appointment don't hesitate to call 999 again to get further ones.
Thanks for the advice Peter, I will call 999 if they happen to that severity again, it'd be nice to get an even clearer picture before my appointment. For some reason, the hospital has something against me taking copies of my ECG home with me. Surely this is irresponsible on their part?
Not had that problem. GP's, heart hospital and the hospital where I was taken by ambulance have always given me copies, sometimes without me asking. Also always been given discharge notes, etc. GP's and hospitals always given me printouts of blood tests. I always ask because I keep my own file and that is the ONLY complete file in existence because NHS records are all area based and I have been in medical places in 3 different CCG areas re heart. Having my own file proved invaluable especially the night I was taken by ambulance because they were able to see the ECG taken at the heart hospital two weeks earlier and straight away identify the additional problem.
I have recommended a number of times that people keep their own file.
Look up EP's name on main AFA website and that should tell you. Also use internet searches (restrict to UK). You may get appointment quicker or it may almost be same day because if EP has children they may be on holiday this week because of half term (if they are then next week's private list may already be full) or may just be full anyway. However if you don't try you won't know!!!!
You are not alone. Arrythmias (especially paroxysmal) can be very disruptive and my EP describes them as 'tortures and torment'. Hang in there. Life will get better. I also have days like this and am young too but not as young as you (37) but have had mine since 27 though not diagnosed until 34. I would advise you try and stop getting to the bottom of 'why' and 'how to stop it' if you find yourself doing this constantly and life revolving round this condition...there are very few triggers for my arrhythmias apart from positional changes (i have vagally mediated AF)...some people have obvious triggers...others dont. If you don't it is harder to control them so you may just need to accept it but that will come in time. I have been on a massive journey trying to live with arrythmias and at one stage i entered a state of almost despair when i was in fast AF and SVT for approximately18 hours a day for about a month. I couldn't even climb the stairs some days and could no longer look after my children on my own as my heart rate sat between 170 and 200 at all times. But things did improve and although my life has changed it has got better than in those early days of arrhythmias. Best wishes and feel free to pm me or ask any questions if you need or want to. I will help if i can xx
Hi Vony. Sorry to hear about your own troubles with AF. I suspect I also have vagal AF, as I have a great deal of symptoms coming from my trachea, and feel the need to belch a lot, the burping fits during/after AF attacks are unbearable sometimes, and it feels like I can't breathe. Are you on any medication at the moment? I'm not sure about this Bisoprolol I'm taking, makes me feel so unlike myself, tired, and I get slight pains in my chest. Not sure if its actually working.
Hope you feel better soon!
Micwal.
I was on various anti arrhythmic drugs but i ended up with a prolonged QT interval and very toxic due to one of them which i was told could have caused me to have a cardiac arrest. So i no longer take any anti arrhythmic. Just bisoprolol to slow the rate. It made me very tired at the start. I was on 12.5 mg. Am now only on 5mg and much less tired. I think you do get used to the tiredness it causes. Keep us posted how you are. Are you having daily episodes? Take care. Be gentle with yourself about coming to terms with this.
Hi
I agree with Finvola, the words are very wise. I had suffered for 7 years, I saw countless cardiologist all of them gave me choices either drug relief or an ablation. After researching I dismissed the ablation! I tried tried different variations of drugs to know avail, in the meantime I was on a quest to find an EP that somehow would give me a magic combination to stop the episodes. When I felt really low and insecure a visit to my GP with a referral to my cardiologist meant I was checked over and Reassured for a while, always it would end with the offer of an ablation.
Then I came across the EP that somehow seemed to have something the others did not. I took the plunge. Currently I'm drug free. So my advice is this. By all means get a private initial consultation,bearing in mind that you will have an ECG and you will be charged extra for this. This will be the quickest way to gain reassurance. if you are offered an ablation ( not everyone is) consider it. My heart rhythm is not perfect but it's not a fib and I'm drug free!
I agree with all the above. Take ablation if offered. You are too young to continue suffering and can get off medication.
I too am a young(er) sufferer (44) but had issues for 20 years. I find hormones (pre menstrually ) cause issues and also if I am having a hectic lifestyle. I don't necessarily have to be stressed in myself just running around squeezing too much into life.
8 weeks post ablation and have ep follow up next week but off all meds.
Bisoprolol made me tired, gain weight,low mood,and in warm weather faint as it made my BP too low. I had better outcomes with flecainide.
Good luck xx
It won't apply to everyone but by experimentation I found that drinking alcohol effects the severity of my AF. I was never a regular binger but I did enjoy winding down in the pub after work and noticed that if I had more than two pints at a sitting I would be AF-aware the next day around mid-morning.
I now make point of never having more than two pints a day and usually less; as a result I rarely notice my AF (unless I take my pulse).
Hi, I also have paf, it's been a bit of a rocky road and I completely understand your worries... The best thing that you can do is arm yourself with knowledge really get to understand it, talk and share your experiences because most of us will of been there or going through it, that in its self can be reassuring that your not alone and others too have had the same fear and anxiety.
On your visit to the ep, talk through your treatment options, don't be affaid to ask questions, I felt this gave me some control to face af knowing what could be done then you can decide how you want to go forward.... it is said ablation is the best option as it is known paf over time progresses to af if not treated and then lessens treatment options, my medication works to some degree but does give me some secondary problems. The thing with paf is that it's so unpredictable you just never know when know it's going to appear, I'm very symptomatic but I've learned to ride the wave when it comes but equally I know when to get off if it's persisting and unstable ! I really do know how frightening all the symptoms are but hopefully after your appointment you can make sence of things a bit more... And there's always someone on here to be on your journey with you... 🙏
The gastro side is I believe relevant (via the Vagus Nerve) and currently I am trying to sort mine out with changed diet and probiotics. Best Wishes.
Ouch. Tough situation.
Lots of good advice here, and I'm glad you're keeping a symptom diary. The only other thing I can offer is to manage your stress. Do everything you can to find inner peace. The place to start is recognizing that this condition isn't killing you, though most of your mind will argue with that. That awareness can give you a bit of space where you can catch - and mindfully observe - your breath. Do this as often and as long as possible.
Of course, I'm talking about meditation, which stabilizes the mind. It's the basis for mindfulness, which is just the practice of keeping a stable mind as you go about your life.
An Indian guru by the name of Swami Satchidananda was once pictured on a surfboard wearing only a loincloth. The caption was, "You can't stop the waves but you can learn to surf."
Good luck.
Hi Kodaska. I agree, there is some terrific advice on this thread which I will certainly follow!
Great quote, and so relevant too! I have been contemplating going to a meditation class for some time now. I will have to look into it, as my uncle also regularly meditates and he is the calmest person I have ever met!
Some good news I suppose. I've started taking the Bisoprolol every day (small 1.25mg dose), and it appears to be working very well. I haven't noticed any ectopics at all, and my heart rate is nice and steady, between 55-70. I'm by no means saying it is good being on medication, but at least its partially improving my quality of life (I can actually get on with work in this mindset).
Recorded this in my 'AF Diary' and will inform the EP about it when I see him.
Micwal.
6 months post Cryoablation 
Kardia -- again!
Using Kardia EKG monitor
Trip to New Zealand
Ectopics with virus?
