Just a little advice. Been having episodes for around 10 years starting around 2 a year. Never knowing what it was I put it down to blood pressure when hunched forward or standing. Now know that's my trigger.Dizziness some palpitations for a around 8 hours or so then normal. Few gp visits with one 24 HR monitoring. Told nothing to worry about. Fast forward to August this year 3 in a month. Picked up on ECG as AF. Started on bisoprol 2.5 daily 5 September. 10 days later had to visit AE. Then pescribed diltziam 120 mg twice daily . Too strong slow heart at times down to 90 mg. Seemed to work then started episodes daily lasting 6/12 hours at a time. Started on dronedone 400 mg twice daily. Back in AE at weekend still racing heart with breathlessness. Told I'm just progressing to permanent AF. I'm only 51 and currently off my work all last week. Anxiety now as well.
Af diagnosis.: Just a little advice... - Atrial Fibrillati...
Af diagnosis.
Hi Tommyboy21,
I’m sorry your experiencing all this as it seems like it’s just got progressively worse for you and quite quickly, which I think can happen for some people.
What has jumped out for me, from what you’ve said, is I can’t see anything about you seeing a cardiologist or having any exploratory investigations ( such as an echocardiogram) done other than the early monitor you had ages ago? These 24 hr monitors rarely pick up paroxysmal unfortunately, which sounds like you were at that time. I can see you’ve been to A&E but you would have seen a general doctor there, not a cardiologist.
As you were diagnosed formally on 5/9 are you now on a list to see a cardiologist? A&E should have said that cardiology would be in touch? If not, please can I suggest you ask your GP for a referral?
Do you know what your HR goes up to? Some of us have watches and fitbits that record our heart rates and Kardias, which can record ECGs.
It sounds a bit harsh of them just saying you’re progressing to permanent AF and it doesn’t sound helpful. Have they said what you can do about it?
Have you had your blood tested recently too? I presume your GP has checked all that?
Been put under arythmia nurses at ninewells but just phone consultation. Was a cardiology person that spoke on Saturday for 10 mins. My HR is around 130/160 while in af on the kardia I bought. Also have really bad anxiety now because of this diagnosis which I think is making symptoms and frequency more severe. Think my GP is getting tired of me. I have had an echocardiogram all fine. Sorry my brain is frazzled at the moment through lack of sleep.
Hi Tommyboy21,
I’m hoping someone else might be able to come along soon with a similar experience, I myself am still quite infrequent paroxysmal, I had it over ten years before I was diagnosed. Only had them every one, or couple of years for many years. Though before my diagnosis last year, I was having them every 3 weeks last Summer and since medication started last September ( I take a low dose Bisoprolol) and lifestyle changes, I have had just one episode this past year. It is possible to turn it around and although they say Afib begets Afib, it can’t always be true. So, because you’re having more and more now, it could possibly still change.
I know exactly how you feel with the anxiety and that really does make episodes worse and it contributed to mine.
Do you take magnesium at all, even taking some of that can be quite calming….I take approx 400 mg a day but you can start on 200mg or so and increase slowly? I take magnesium glycenate and magnesium taurate as they are some of the better types and recommended for afib. They have helped me. Slow deep breathing helps immensely too, right from the diaphragm and not shoulders. Honestly, it works.
If your heart structure is fine, have they ever suggested fleconaide? This is another anti arrhythmic medicine which helps people. Dronedorone is I think supposed to keep you in rhythm. What have they said are next steps to help you? Have they mentioned ablation?
GPs - don’t know a lot about Afib in my experience…but keep on at them and make them tired of you and perhaps they will listen to you and do something more for you.
I had a similar situation in Scotland two years ago. Alas NHS cardiology has been badly affected by covid with severe delays in treatment. I would strongly urge you to make an immediate appointment with a private electrophysiologist / cardiologist if you have £250 available. Ask your GP practice to arrange it and forward your test results. When you go, take your Kardia reports. It will be the best £250 you have ever spent.
Hi Tommy,
So did they take you off Bisoprolol, and change to diltiazem and then they added the dronederone?
What was the reason they took you off bisop if you are off it?
When you say your heart rate was too low on the 120mg diltiazem, what did it go to at its lowest?
If your echo results were fine, you should give Flecainide a try. Take it alongside Bisoprolol (or another rate control drug) and there is a good chance it will keep you in NSR.
Think they may try felcainide I'd dronedone doesn't work.. going to try back to work today as need money.
Hi TommyI'm in Scotland too and might be able to encourage you if you wanted to swap notes. I have literally no Afib now. I know how bad it feels and I'm sorry you've had this. I suffered so long! Just heading for work. Cheers Gary
gmq1@hotmail.com
Thanks Gary. I'm in Arbroath by the way.
Hi Tommy,
Push to get the dronedorone changed if you can - as it doesn’t seem to be doing what it’s supposed to & fleconaide is definitely worth a try…please let me know if you are still on the bisop? I only ask as you mentioned you went back to A&E after 10 days of being on it and it takes 14 days to work properly when you start taking it ( if you/they decided to stop it) I was wondering how low your HR was going when you said it was too low too, when the diltiazem was lowered because of it?
It is definitely worth trying to book a private cardiology or EP consultation as others have said. If you are a candidate for ablation, they can put you on an NHS list. I’m not sure if Scotland is different but in England you can just call the EP or cardiologist secretary and arrange the private appointment yourself, you don’t have to go through your GP.
Good luck.
If you can find the cash around £300, I would book a private cardiologist appointment. More chance of getting the right prescription, reducing episodes and anxiety = more ability to earn to recoup the cost of the appointment. Do your homework first on the condition here and elsewhere and take a list of questions with you.
Kia ora from New Zealand Sorry I can't really give you advice, I can only tell you about my own personal situation.
I was diagnosed with AF about 2 years ago, but I suspect that I've had it for a few years undiagnosed.
I'm a 51 year old male. Work in the agricultural industry so fairly active. For me my main trigger is stress. 2021 was a very successful year for me and I was going into AF about every 3 weeks. This year has been far less stressful, and as a consequence I only went into AF in January and again July, both times work related stress.
I am only daily Flecanide and Diltiazem. When I keep stress under control, these drugs keep me in normal rhythm. If I get stressed I get anxious about going into AF. Which can lead to a viscous circle.
If I go into AF, I'm finding a quick brisk walk can help me recover, along with taking an extra Diltiazem. Others on this forum also see a benefit of exercise to increase the heart rate, which can help return. Others report the Valsalva maneuver - Google it.
Anyway, I'm trying to take the attitude that stressful events happen, which are beyond my control, so I try to deal with the situation best I can and get on with it. Try not let the stress get to me. Admit that can be easier said than done.
I had an ablation 8 weeks ago on the public health system after an 8 month wait. I couldn't afford to go private, I think we have a similar health system in NZ. So far so good.
Ask your Dr to refer you to a cardiologist to see if an ablation would work for you. Sometimes you have to hound them to get anything done.
All the best with your journey.
Blake
I really think you need to see an EP (Electrophysiologist - specialist cardiologist for arrhythmia). One route is the private consultation as recommended by others, you can then transfer back into the NHS for subsequent appointments and treatment. Another is to go and thump the desk of your GP and ask for a referral to one even if it means going 'out of area' to one of the specialist centres.
Oh dear you do sound as if you’re having a bad time. I’m so sorry I know how you feel
I’ve had afib/tachycardia for years but until I finally saw a cardiologist it was fobbed off as stress until I saw another cardiologist at St. George’s tooting who then passed me on to an EP who gave me an ablation which made my heart rate now very slow they want to do another ablation but after the problems I had with the first one I’d rather stick to the meds at the moment even though lots of people have many ablations
However about 2018 I was rushed in to hospital 11 times just before Christmas and new year and it took about 4/5 days to get back into a half normal rhythm.
I was given 3 cardioversions during this time which weren’t particularly successful until the last one was a flecainide cardioversion
From then on I was put on bisoprolol flecainide apixaban (I already take thyroxine and a diuretic) and from then on (touch wood) I call the flecainide my miracle drug apart from maybe an odd flutter of palpitations I have been ok and no more of those awful crashing thumps snd fast irregular beats
I’m surprised that your GP or cardiologist hasn’t jumped on to the fact of your BP as your lower figure is extremely high
I’m sorry that you are going through such a time and also apologies for the long message
Best wishes
Pat
Thanks everyone for the responses. I've had more help from your comments than in the last 2 months. Just actually had the cardiology on phone half hour ago. Seems they might actually be starting to get a plan. Been in hospital and seeing cardiologist before being let out seems to have been a blessing and cut out the GP that just wants to double meds and put me on antidepressants for anxiety.
Hi pat that's my bpm. Not blood pressure.
Oh I thought I read in your second note that you said your BP was 130/169 Perhaps I read it wrong.
Thank goodness something started. You'll be climbing up the chimney with Father Christmas at this rate and flying everywhere. All the best x
Just clicked on this after your comment on my post. Nightmare mate and I can totally sympathise as you could see if you look at my post history. I don’t know who you have managed to see so far but what helped me no end was paying privately to see an EP/Cardiologist specialist. It meant I had nearly 45-50 mins in a room with an expert and also an echocardiogram.
I was terrified my heart was damaged. I suffer from anxiety and this has ramped it up to the maximum levels which again hasn’t helped anything at all.
My echo came back as clear with no signs of enlargement or damage. He said that was a good sign and assumes I haven’t been persistent for very long, although i think I have been. He explained all my options for treatment and has also referred me back to the nhs for a CT angiogram as I have high cholesterol. At least with that I know they can treat it with stents or medication and yeah I’m praying I’ve dodged that bullet also , I was most freaked out about structural issues rightly or wrongly.
Anyways I’m also very new to this many more useful comments from the experienced on here.
Good luck.
Yeah I feel your pain. Luckily my echocardiogram was fine as well. Honestly anxiety has really played on this for me. I have been a wreck to the point i was off work. I walked into the doctor for ECG normal while actually in afib and came out awful after diagnosis. I know it's health anxiety in my head but can't switch it off.
totally feel the same mate ! Now I’m also in my head about anticoagulants … my EP says I don’t need them and yet nearly everyone or 90% of people on here say your mad not to take them. Nightmare.
Yeah I'm told no as well. I think because we are relatively young and no other underlying conditions it outweighs risk of bleeds. I work with knives all day.
Sure its not side effects from the meds. That happened to me. I can only take in small doses otherwise i start feeling sick as.
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