AF advice for a newbie!: I am having a 48 hr... - AF Association

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AF advice for a newbie!

Clyde12
Clyde12
31 Replies

I am having a 48 hr hear monitor in July for probable AF. I have had daily irregular, sometimes very fast heart beats since at least March. I was on bisoprolol, only 1.25mg fo a short while which di help to calm things a little but still had irregularities 4/6 times daily. (At least!....cos I can’t keep hand on carotid all the time!) The bisoprolol, even at that low dose made me feel I was walking in mud, depressed, in a fog etc ...my pulse ranged from 38 to 170. I walk reasonably briskly twice a day with my dogs covering about 4/6 miles in total. I was diagnosed with breast cancer in 2014 and have had mastectomy, chemo and herceptin, radiotherapy and reconstruction (from my tummy).id like advice for questions to ask cardiologist after monitor. I feel well at the moment though still having irregularities.....resting pulse now 55/60 off tablets. Thank you. Oh yes, I’m 69yr old female.

31 Replies
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doodle68

Hello Clyde welcome :-) how long do the irregularities last . If it is more than a couple of minutes, In your position I would try to get an ECG while you are having one if you can rather than wait for the 48 hour monitor in July.

If you have Paroxysmal AF (the kind that stops and starts) it can be difficult to get a diagnosis and AF seems to hide at the sight of a monitor.

If I had known about them when trying to get a diagnosis myself I would have purchased a Kardia monitor and taken my own recordings during an episode.

It is difficult to say what questions you should ask of a cardiologist, you really need a diagnosis first .

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Clyde12
Clyde12
in reply to doodle68

Thank you for your prompt reply. I’ll have a look at that kardia monitor. Have had 2 days recently without episodes but have had a couple this morning. Have had 2 ecg at the Gp surgery but all was normal!! I am aware I’m at risk of stroke or cardiac arrest but can’t get monitor fitted any earlier by NHS.

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Buffafly
Buffafly
in reply to Clyde12

Stroke yes, cardiac arrest no! It always feels like it though 😨

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emunomd

I would ask to see your cardiologist NOW( at least in next couple of days)

If you are going in and out of a fib that puts one at increased chance of throwing a clot which could cause a stroke. I dont want to scare you but that is a risk. Cant they do an exercise stress test in the office and an echo/stress echo to see if they cant bring on irregularity with exercise while in office.

You may need an anticoagulant(blood thinner)

Call the office and tell them it feels like you are having increased irregularity and cant they see you today or tomorrow

Many good wishes for you!

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Clyde12
Clyde12
in reply to emunomd

Thank you for your reply. I live in Scotland and appointments are slow! I am aware (as retired nurse!) of risks of this condition. I’m going to look at getting a monitor. I have a Fitbit watch but whilst it shows fast/slow heart rate it doesn’t show irregularities.

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jennydog

Doodle's advice is first class. One of the problems with a 48 hrs monitor is that it is unlikely to pick up PAF. I had a 7 days monitor which picked it up in the middle of the night on day 4.

There has recently been publicity about radiotherapy for breast cancer and heart damage. It is now advised that you hold your breath during the treatment to avoid damage. I had radiotherapy on my shoulder which may well have caused the fibrosis in my heart.

Physically, you sound to be doing well. Do try to avoid stress which is not helpful for your heart.

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Clyde12
Clyde12
in reply to jennydog

Thank you for replying. Trying to avoid stress! Am going to look at Kardia monitor.

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cassie46
cassie46
in reply to jennydog

Interesting jenny - I had breast cancer in june 2014, fortunately only a lumpectomy,then radiotherapy and meds. They were very precise as to were the waves/beams whatever they were to go as I had some nice little tattoo spots put on me to tell them exact location. But mine was on my right side so told no chance of effecting my heart but might affect my right lung - which I think it may have. Regarding holding you breath, that would have been impossible for the length of time - I did have to lie as still as possible though.

Cassie

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Clyde12
Clyde12
in reply to cassie46

I got tattoo dots like you and mine was right Breast too and as you say you couldn’t hold breath for that long. Because I had herceptin I also had heart scans in Edinburgh which entailed a radioactive substance being injected as they know herceptin can affect the heart. I’m taking letrozole tablets daily (anti oestrogen) and one of the side effects is arrhythmia but I’ve not been told to stop it......I have asked about this! Thank you for replying.

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cassie46
cassie46
in reply to Clyde12

Hi Clyde12 - I am taking Anastrozole (was on Letrozole for 3 1/2 years changed about 6 months ago because of side effects, was causing slight vaginal bleeding) and I have never been told that it may affect AF or cause arrhythmias. I was diagnosed with AF 4 1/2 years ago and have been taking breast cancer medication for 4 years now - I will ask my consultant next time I see him. Just another year to go on the Anastrozole, one less tablet to take and goodbye to some of my joint pain I hope although taking Anastrozole has already improved it slightly!!!

Cassie

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Petrified

I'm in Scotland too & our local hospital issue you with a Kardia monitor for a fortnight. Good idea as if you find it helpful you could buy one. I've also had 24 & 72 hour monitors. You've been through the mill already and I hope you get some answers soon.

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Clyde12
Clyde12
in reply to Petrified

Thanks....I love your name petrified! I can’t really afford one of those monitors but the Irregularities seem to have settled for the moment. Having had them since mid March this is a welcome break but I know they will return. As I’ve read one can become obsessed with feeling carotid and wrist pulses! I do feel vulnerable at the moment which doesn’t help with anxiety but these ‘blogs’ are helpful. I have a feeling the monitor in July will miss the episodes like the ecg’s have....what happens then?

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Petrified

You're absolutely right!!! I was getting up through the night & checking out pulse & BP. Was actually getting ridiculous. I had a monitor on & returned it to the hospital at 9am with nothing of note on it, but was in A&E that night & admitted!!! Next tape caught the AF firing up and I was in A&E again and admitted!!!! The anxiety is the hardest thing to cope with. It's almost overwhelming. I was so laid back before this, if only I'd known!!!! If you're seeing a Cardiologist you could ask whether the hospital can lend you a Kardia. I was surprised to be offered it. I'd thought about buying one but I'd probably be obsessed & it'd be just another thing to make me worry. From your name I imagine you're in the Argyll & Greater Glasgow Health Board area - seemingly the arrythmia clinic at Glasgow Royal's very good and is a 'feeder' for The Golden Jubilee. Good luck - you deserve the best of treatment after what you've been through already

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Clyde12

Clyde is the name of a rather special dog we had! I live in SW Scotland. My cancer treatment was super....I’ve had one visit to cardiologist so far and whilst the chap was very pleasant he seemed rushed and hadn’t time to explain ‘stuff’. That’s why I need to have questions ready to ask him. I’m learning a lot already through reading about AF. Thanks.

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Purpletara

Hi Clyde. I am following your post with interest. I'm sorry I have no words of wisdom for you because your post could be about me!

I am a 66 year old female, I used to walk my dog 5 miles a day but have now been put on bisoprosol for arrhythmia and feel shattered on it.

I have had an ECG which didn't catch the flutter and am seeing a cardiologist in 4 weeks time.

I've gone from feeling fit to a couch potato!

Really couldn't stand feeling like this for the rest of my life!

Best wishes to you.

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Clyde12
Clyde12
in reply to Purpletara

The bisoprolol was dreadful for me. Coming off it was worse. It was only a wee dose (1.25mg) but I checked twice if I should wean off it and was told no, just stop it, it’s only a wee dose! I stopped it on a Thursday and within a day and a half felt awful. Unfortunately I had to have a colonoscopy on the Monday. By then the adrenaline was returning.....my BP went up to 186/60 and my pulse was very erratic and very fast....the nurse wouldn’t tell me! She told someone senior and was told it was white coat syndrome and me being frightened of the procedure even though I’d said about the heart problem etc. As expected my colon was fine by the was.....my piles had bled due to aspirin (which I’ve now stopped). Basically no one wanted to know about the high BP and the only one concerned about it was the auxiliary nurse.

If you do have to stop your bisoprolol.....wean off it! It took over 2 weeks for me .......I only knew it had gone by my resting pulse going up from 40 to 55/60. Good luck to you purpletara. X

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Purpletara
Purpletara
in reply to Clyde12

Hi Clyde. Doctor has reduced bisoprolol from 5mg to 1.25 but still feel as if the cure is worse than the problem! My resting heart rate has gone from 66 to 49. It’s making me feel exhausted and have loose bowels but I’m worried about coming off it.

I don’t want to stay on this drug but this is the first time I’ve had a serious health scare and it’s put my family in a tizzy!

How can you wean yourself off 1.25mg. It’s only a tiny tablet but what an impact it’s had on my life!

Pleased to hear you are doing well.

Going to move this body and take my Dobi for a walk!

Best wishes.

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doodle68
doodle68
in reply to Clyde12

Hi Clyde should you need to be prescribed a beta blocker there are others rather than bisoprolol. A lot of people on here seem to have problems with that particular medication so it might be worth asking to try another.

I have prescribed the beta blocker nebivolol because it is usually better tolerated than other beta blockers for those with chest conditions and I don't seem to have as many side effects as some people on other beta blockers.

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lallym

The kardia is a very useful device as you can print out the traces or email them to yourself and then show them or email them to GP /cardiologist. This will speed up diagnosis so a really good investment in your health.

You could then ask your GP to prescribe anticoagulants which alleviates the main danger associated with AF.

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Clyde12

Thank you for your reply. My GP has left everything to cardiologist for now but I think I’ll have to have another chat with him! X

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AIW58

Hi

My suggestion is to ring cardiology appts and say you could take a short notice cancellation for the 48hr loop recorder. (Assuming you can!). My query is though -when you had a racing heart before your colonoscopy did they not do an ECG then? If you were having your symptoms maybe they captured the AF, unless you think it could be frequent ectopics? High BP as you will know, being a retired nurse, can result from stress as can a high HR but an irregular rhythm should prompt a proper 12lead ECG.

Other thought is, if you have an episode would your GP surgery do an on the spot ECG? You're right a 48hr monitor may miss it. They can be worn for 7 days or longer depending on the make and battery life. (I fit them to patients myself which is how I was able to get a recording of my own AF as I had one with me at the time.) There are also ILR (implantable loops recorders) which are injected under the skin and can be downloaded when you have had an event.

It is horrible wondering day to day if you are going to have an event. I hope you get a diagnosis soon and a cardiologist who listens to you and isn't rushed. Good idea to go with your questions ready. If you do get hurried out you could go back to the GP when they have had the clinic letter so they can go through it with you.

good luck

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Clyde12
Clyde12
in reply to AIW58

Thank you. I am going to see my GP this afternoon to see if I can at least have anticoagulants and hopefully avoid a stroke! I will also ask if theGPcan have any influence on an earlier appointment for monitor. I took my BP this morning after I’d been hoovering and it was 182/65.....far too high! Anyway, I’ll see what the GP says. I don’t want to be a statistic! It’s 20 yrs since I nursed! X

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AIW58
AIW58
in reply to Clyde12

GP may be able to expedite your appt but also ring the appt centre to see if they run a short notice list. I always do when I'm waiting for appts. Helps for them to know who is readily available if they get patients cancelling.

Yeah that is a high BP but after exercise. What does it settle to when you are resting?

There'll be a link on the AF assoc pages to assessing your need for anticoagulants. Your GP can do it it too (CHAD score). I imagine though they first want to know if you are getting AF. Did they do an ECG when you were in the hospital prior to the colonoscopy?

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Clyde12
Clyde12
in reply to AIW58

Thank you. Just back from Gp who took my BP.....still high so he said ....well the cardiologist suggests in his letter to us that you try amlodipine! It was an after thought by cardiologist and no one told me! Anyway that should help a bit. He did a risk assessment about anticoagulants and we decided that until Ive got a ‘proper’ diagnosis I should not take them at the moment. I wish I’d pushed for an ecg when waiting for colonoscopy but I didn’t! X

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AIW58
AIW58
in reply to Clyde12

I'm glad you have a GP who listens & maybe they could do an ECG if you have an episode and can get there in time to capture it.

I get PAF have not been started on any anticoagulants as I only score 1as a female (I'm 58). I'm waiting for a CT coronary angio before they start me on BD Flecanide. I hope you get on OK with the amlodopine. Worth monitoring your BP at home and recording readings. Especially after hoovering then you can delegate that to someone else! :-)

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KMRobbo

I am 58 year old male - no other health issues other than being bit overweight. I was terrible on 1.25mg bisoprolol - I was asleep in 40 minutes after having one tablet and woke up feeling dreadful and with next to nothing exercise tolerance. I could not live like that so after 7 days i gave up and my GP prescribed atenolol which was better - but not great - still very tired, could not manage a full day at work. After 2 weeks of not " getting used " to it , then back to the GP who surmised i could not tolerate beta blockers and put me on Calcium channel blockers as rate control and i went onto 120mg Verapamil which had little in the way of side effects , a bit of exercise intolerance when running . (which now I cannot believe I complained about but i did!)

Unfortunately my AF "developed" after 2 years and got more difficult to control so I was put on to flecainide rhythm control with diltiazem 200mg rate control (another calcium channel blocker) . This was still better (for me) than the two betablockers but had exercise intolerance and brain fog and some tiredness. I tried 120mg of diltiazem which was much better side effects-wise but owing to a breakthrough the hospital upped my dose again. I did not complain (too much ) as by that time I had an ablation planned and the EP said I would not need any drugs if it was successful . I had the ablation at the end January 2018 and I have not been taking any drugs since 15th May with no issues.

So the questions I would ask may doctor/ep/cariologist are:-

(1) can you try an alternative beta blocker to reduce your drug side effect issues which are ruining your QAL, if not can you try a calcium channel blocker or anything else he/she would recommend? (I am not medically trained - so I cannot advise but only can tell you what worked better for me and i did not try everything nor have I your medical history). Note i was initially prescribed the rate control by a cardiologist in hospital but got them changed by my GP which was easier/quicker.

(2) is there anything that can be considered more long term to get rid of the AF and avoid the drugs should none of them be satisfactory for your lifestyle?

(3) I would make sure they are aware of your bouts of high heart rate. I was asymtomatic even at high HR (was once running when my HR monitor advised I was at 243bpm) but July 2017 I spent most of 8 days (inc 4 nights in hospital) between 130 and 190 bpm and I was VERY tired after I was eventually cardioverted, I took weeks to recover (not helped by a more intrusive drug regime as described earlier).

My hospital tell me if i have sustained HR of >130 then go back to A&E. They will try to reduce it by drugs and then cardiovert if it does not improve.

Best wishes

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Clyde12
Clyde12
in reply to KMRobbo

Thank you for that in depth reply. I’ve printed off all this help I’ve had. I liked to be armed with questions and some understanding prior to seeing professionals!

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KMRobbo
KMRobbo
in reply to Clyde12

Always remember though that this AF is very personalised- what works for me or others does not necessarily work for you. My reactions to drugs good or bad may not be the reaction you get to the drugs at the same doses . That is why it is often described by someone on the forum as a "mongrel" condition.

Best of luck wth yours!

Mark

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Clyde12
Clyde12
in reply to KMRobbo

Thank you for that. It is good to have the support and advice from real people who’ve got much more understanding of AF than a lot of professionals! I found this out after my cancer diagnosis discovering that even though I’d nursed for many years (including many with cancer) I had a limited knowledge. Every person is an individual who will respond differently....some like to bury their heads and others look stuff up. This probable diagnosis has hit me much harder than the cancer one even though it is an aggressive cancer which will return someday! I didn’t know it was called a mongrel condition! X

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Ianc2

ask him about the relationship between weight and blood pressure. In my experience the only way to get my blood pressure down was to lose weight.

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Clyde12
Clyde12
in reply to Ianc2

My weight is fine and I’m very lucky not to be over weight. Walking 2 whippets twice a day for a total of 4/6 miles has helped!

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