AF lifestyle: All my life, I've been... - British Heart Fou...

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AF lifestyle

MountainGuide profile image
46 Replies

All my life, I've been outdoors and active. Fifty of those 77 years has been working as an outdoor instructor/mountain guide, sometimes at altitude in the European Alps. Twelve years ago I had ablation surgery for Atrial Fibrillation. It worked okay until recently. Cardio inspections recently found that persistent AF has returned. Blood thinners and BP meds have been prescribed. Since taking the drugs I have been feeling pretty awful. Tired, lethargic and anxious.

I enjoy being active, cycle touring and sea kayaking. Is anyone else on this forum in a similar situation?

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MountainGuide
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46 Replies
Hanibil profile image
Hanibil

Hi you say recently it could just be your body getting used to the new drugs. If it persists see your doctor to see if there are alternatives to the drugs you are taking.

MountainGuide profile image
MountainGuide in reply to Hanibil

Thanks for replying. Alternative drugs have been suggested by the cardio nurse. Maybe also conflicting with other drugs I am taking. What about cold water swimming? Is that a risk?

Chinkoflight profile image
Chinkoflight

Hi , it can depend on the drugs you are on. I've been on Edoxaban (anticoagulant) and in the first week or so I did have some aches in arms and legs which I put down to the medication. Also on Atorovastatin which also has the possibility of these side effects but I didn't experience this before I started the Edox in May. But I have stuck with my exercise regime and run most days, Parkrun Saturdays. There are definitely unexplainable up and down days. 2 bog rough short runs last week then I ran a new PB in Parkrun on Saturday! Some say the time of day can have some bearing on this. Edoxaban is a one a day tablet, I take in the morning. Some say take it in the evening. Other similar meds can be two tablet forms. I'm male aged 71.Keep track of the symptoms, time of day etc, and your BP too. I can't comment on BP meds, at the moment I'm okay. I have bradycardia so I'm not on any Afib meds.

Stick with it, keep good notes before going back to GP if it persists, and maybe getting a change of meds.

Hope this helps

MountainGuide profile image
MountainGuide in reply to Chinkoflight

Thanks for replying and suggesting stuff. The idea of taking the the edoxaban in the evening away from my morning drugs is worth trying. I'll be happy if I can still get out in my kayak or on the bike. Sounds like it's time to consider an electric bike!

Pyowacket profile image
Pyowacket

it takes time to adjust to any medication. Good luck getting the right balance between doing what you enjoy and taking the medication.

MountainGuide profile image
MountainGuide in reply to Pyowacket

Thanks for getting back to me. It certainly helps to share feelings. Cheers

sandandkev profile image
sandandkev

Hi I was diagnosed with af in July,not offered anything except bisoprolol and blood thinners,it made me feel tired,sick and dizzy,have reduced dose as pulse going down to 50! At present back in normal rhythm which is heaven,I think the beta blockers have so many side effects but not sure what answer is

MountainGuide profile image
MountainGuide in reply to sandandkev

Thanks,I've copied and pasted my latest reply here. I've had dozens of people wanting to relate with me, which is great. I'll try and keep the forum updates on how I progress in future. I saw the doctor today. She took me off of Lisinopril and started me on Amlodipine for BP (5mg) and Furosimide (20mg) as a diuretic. My blood thinner is Edoxaban (60mg). I asked her about activity and was advised to do as much as I felt able. To an extent a number of us react in different ways to the drugs. Try and stay positive. I asked my doctor if there are any surgical procedures that would help my situation. Unfortunately I have a very dilated aorta and cardioversion would not make a difference, because of this, Im told.

Cheers

NickNacks profile image
NickNacks

Exactly the same circumstances for me. They have added Amiodarone to my drugs and that seems to have sorted out the AF.

Coffeeandwalnut profile image
Coffeeandwalnut in reply to NickNacks

how do you get on with amioderone? I have just been prescribed it but yet to get it to take it. How was it loading up on it? Thanks. .

NickNacks profile image
NickNacks in reply to Coffeeandwalnut

The loading up process is a bit tedious but had no problems with it. They need to check your blood to make sure that kidney function is OK. Recently went back to Cardio and had no AF and I asked them which of the many changes they had made to my medication would be responsible for "curing" the AF problem. They told me that without doubt it was the Amiodarone.

Coffeeandwalnut profile image
Coffeeandwalnut in reply to NickNacks

Thanks. I’m a bit worried about it all to be honest. I’ve just found out I have high serum creatinine on a blood test done last thurs and I haven’t even started amioderone yet, which I should have done., got to be retested on 29th dec. trouble is I need the amioderone as my other meds don’t seem to be controlling stuff anymore.

Mountwood profile image
Mountwood in reply to NickNacks

I hope you were warned about possible side effects of Amiodorone. They can be serious.

NickNacks profile image
NickNacks in reply to Mountwood

They sort of did and I've looked it up online.

Fullofheart profile image
Fullofheart

I'm 48 and have had AF for 20 years. Most of those years I managed to stay pretty active, but last 3 or 4 I've been really hampered. I'm 7 months free of AF now. Feels great but still not back to full fitness. I've switched higher energy activities for walking, swimming, tai chi, pilates etc. It's difficult to know sometimes if it's meds or the symptoms of the AF when you are feeling breathless, dizzy or fatigued, depending on what meds you are taking, and for how long. If you're new to meds it might be a settling in period.I swim in the sea (13 degrees is about my lowest temp) on a warm day, not in winter. I wouldn't do cold water swimming. The shock to the heart is a bit of a risk.

TVR1 profile image
TVR1

Hi mountain guide

Active, (now 69)all my life, cycling sea rowing kayaking .

Until I got AF in August . Found that I got it thanks to my Apple Watch.

GP put me on beat blockers, blood thinners.

But the beta blockers not me for a six, exhausted, tired, sleeping & sweating when I do the slightest activity.

Gave up Waiting for NHS cardiologist, went private for £200.

Cardiologist took me off beta blockers immediately and put me on flecainide, after heart scanned ( £130). Just to check there was no underlying problems.

Within 24 hours, my heart was working normally.

Cardiologist still wants me to go and have electrical cardioversion. Which I’m waiting to have done,so I can come of flecainide.

And hopefully just take blood thinners.

Hope that helps.

Tvr.

cholet profile image
cholet in reply to TVR1

wow that’s fantastic news 👍 i’m

seriously thinking about going private it seems it was worth it in your case 😊

wischo profile image
wischo in reply to TVR1

I can not understand why the NHS always seem to paste and copy a drug therapy for all heart problems, Ramipril, beta blocker and blood thinners despite the fact that you may have bradycardia or other related problems especially with Bisoprolol. There are a mountain of other drugs for Afib out there and I think the Bisop is purely to save money for the NHS. Apart from Amioderone which is a dodgy and dirty drug there are lots of alternatives and would appear going private seems to be the path to finding this out. I find this infuriating that you are prescribed medication despite the fact that it is destroying your quality of life for a very long time.

MountainGuide profile image
MountainGuide in reply to wischo

Thanks Wischo. I'm certainly asking for a second (private) opinion in the near future.

MountainGuide profile image
MountainGuide in reply to wischo

Hi again TVR1. Thanks,I've copied and pasted my latest reply here. I've had dozens of people wanting to relate with me, which is great. I'll try and keep the forum updates on how I progress in future. I saw the doctor today. She took me off of Lisinopril and started me on Amlodipine for BP (5mg) and Furosimide (20mg) as a diuretic. My blood thinner is Edoxaban (60mg). I asked her about activity and was advised to do as much as I felt able. To an extent a number of us react in different ways to the drugs. Try and stay positive. I asked my doctor if there are any surgical procedures that would help my situation. Unfortunately I have a very dilated aorta and cardioversion would not make a difference, because of this.

Cheers

Harefield2106 profile image
Harefield2106 in reply to TVR1

hi tvr

My Apple Watch also says I have AF but just of 2%.

Keep meaning to mention it to my doctor, would just 2% make a change in how I’m feeling?

TVR1 profile image
TVR1 in reply to Harefield2106

Bit confused where did you get the percentage figure from is either you’ve got it or you haven’t or it’s intermittent?

You have an Apple Watch 4 or above for an ECG read out which is link to your phone.

ECG from my Apple Watch can get a printout via My Phone from PDF file for the GP.
Harefield2106 profile image
Harefield2106 in reply to TVR1

Ah. I’ve an Apple Watch 6 and it pings up and tells me. Also the Health app shows it. It’s never told me AF when I did an ECG (that I recall)

Health screenshot from iPhone
wischo profile image
wischo in reply to Harefield2106

Once you let an apple watch know you have been diagnosed with Afib it will never give you a reading below 2% as it can not tell you you do not have afib for legal reasons. Generally an AF burden of 2% or less is regarded as very low.

MountainGuide profile image
MountainGuide in reply to TVR1

Hi Tvr1. Thanks for your reply. If it's affordable I'd go private and have had a new knee and various foot ops that way. Those cardio inspection prices sound like good value. I had a cardio ablation 13 years ago and it worked well until AF returned recently. I'm seeing the Doc again this week.

Oldgimmer66 profile image
Oldgimmer66

Hi. I empathise entirely. I enjoyed a very active lifestyle until May this year. Mountain biking, walking, & skiing. Now that I can barely walk 200yards I’m finding it extremely difficult to adjust, but adjust is what I must do. If you have Chat GPT it’s worth asking what activities are now suitable for you. When I did that it came up with all sorts of stuff that I hadn’t thought of. It’s going to take me time to alter my lifestyle but it’s the only option. I hope you find some activities you really enjoy. Give yourself some time to come to terms with the loss too. It’s almost a grieving process and you need time.

MountainGuide profile image
MountainGuide in reply to Oldgimmer66

Thanks Oldgimmer66. I felt that way when AF first appeared 13 years ago. At that time I had a keyhole Ablation procedure which was successful until the AF returned this year. Cheers.

Ned61 profile image
Ned61

I dont know how long you have been on the but I had a problem initially with the blood thinners, clopidogrel. They made me feel spaced out and a bit weird. I switched to taking them at night and that worked but I kept forgetting to take it. So I went back to taking the clopidogrel,statins and beta blockers first thing in the morning and it seems ok now, so maybe it just takes a bit of time. I agree with one of the other posters here-there are good days and bad days. Sometimes I feel as though I could run forever and other times I just feel like a fat bloke wheezing around the forest (which in truth is probably her are to the mark anyway!). Good luck with it all, I hope things even out for you.

MountainGuide profile image
MountainGuide in reply to Ned61

Thanks Ned61.

MountainGuide profile image
MountainGuide in reply to Ned61

Thanks,I've copied and pasted my latest reply here. I've had dozens of people wanting to relate with me, which is great. I'll try and keep the forum updates on how I progress in future. I saw the doctor today. She took me off of Lisinopril and started me on Amlodipine for BP (5mg) and Furosimide (20mg) as a diuretic. My blood thinner is Edoxaban (60mg). I asked her about activity and was advised to do as much as I felt able. To an extent a number of us react in different ways to the drugs. Try and stay positive. Your post is one of the more positive replies.

Cheers

Ned61 profile image
Ned61

nearer

DWizza profile image
DWizza in reply to Ned61

Hi Ned , I’m a similar cocktail , do you think taking the clopidogrel at night really made a difference? I might try it . Take artovastatin at night … wondering if taking all the meds (bisoprolol 1.5, half a 1.25 Rampiril, as well ) at night night make me feel a bit more lively in the day ? Bloody tinnitus too from the statin I think …

PaddyRedVan profile image
PaddyRedVan

Hi Mountain Guide! I was a Mountain Instructor for many years and still enjoy the mountains. I do a bit of fell running and walking, though not so much climbing now except on indoor walls. I also enjoy kayaking, cycling etc. I dont have AF but i got 3 stents fitted a year ago which was a surprise. I did have significant issues with medication, especially amlodipine, bisoprolol and also an ongoing battle with statins. Currently simvastatin. It leaves me lethargic, tired and slow. It took me a long time to get used to the statin and just when i felt ok they decided i needed to double the dose. Im hoping that i will get used to the higher dose so tgat i can get back into the hills. I havec5 munros left to do. Two on skye, one on knoydart and two at Ben Alder. I need to finish them before my body falls apart! Take care and keep your chin up!

DWizza profile image
DWizza in reply to PaddyRedVan

Hi Paddy, interesting to hear your experiences too. I’m on artovastatin , clopidogrel, bisoprolol (1.25) and half a Rampiril ( half of a 1.25) plus aspirin and a pantaprazole.. post Nstemi and quadruple bypass in July. I made a brilliant recovery early on , found the NHS level 3 6 week rehab program way to easy and underwhelming. Now working with a specialty cardiac physiologist (on line) for resistance/weight training and running ( just achieved 5k twice last week 🙌🤣).

However, I feeling more and more tired , lethargic and achy. That chomp voice creeps in and I’m like sing enthusiasm for training whereas I was so up for it . Tiredness/fatigue a bit of dullness and soreness nearly put me off my strenuous yoga class this morning. I turned up feeling cr@p but made significant improvements. I’m wondering if the meds are contributing to this cloak of fatigue and general sh1te feeling. The statin I take at night , the pantaprazole morning an hour before food , the rest with breakfast. All my numbers are fantastic, resting heart rate (45-49) BP 111/68 , all cholesterol 2.7 .. . I should be feeling on top of the world but I don’t ?

PaddyRedVan profile image
PaddyRedVan in reply to DWizza

Sounds familiar. I got a pb in my pak run a few weeks back and felt great but now i feel tired. I was like that for nearly 3 months on the first batch of statins. Im assuming its the same now since ive doubled the dose. I did a race, slowly two weeks back and broke some ribs too when i slipped! Im planning to do a race on boxing day too. I have tinnitus almost all the time too, which i believe is li ked to the statins, but i try to ignore it.

DWizza profile image
DWizza in reply to PaddyRedVan

The tinnitus 🤦🏼.. it’s either a the background noise of an aircraft cabin or hearing test ..🤣.

Goii on d luck in the New Year , broken ribs is just no fun at all …

MountainGuide profile image
MountainGuide in reply to PaddyRedVan

Thank PaddyRedVan. Thanks for getting in touch, it's appreciated. Early days yet for me and I'll talk to the Doc about the advice I'm getting from this forum. Cheers

MountainGuide profile image
MountainGuide in reply to PaddyRedVan

Thanks PaddyRedVan. Always good to share experiences. We are all in this together.

Nickybhf profile image
Nickybhf

Hi,

My mum was diagnosed with AF last year and was prescribed Bisoprolol & blood thinners, I can honestly say it took a few months for mum to get used to the tablets. She also had the symptoms you’ve mentioned, along with feeling nauseous. The blood thinners were changed and gradually the symptoms settled. Hopefully you will adjust in time with the medication.

MountainGuide profile image
MountainGuide in reply to Nickybhf

Thanks Nickybhf. That sounds positive. I'm seeing the Doc this week. Cheers.

GrannyE profile image
GrannyE

hi. I skied for 60 years and loved the mountains but was told by a cardiologist that I should not go up high any more because of my heart.

MountainGuide profile image
MountainGuide in reply to GrannyE

Thanks,I've copied and pasted my latest reply here. I've had dozens of people wanting to relate with me, which is great. I'll try and keep the forum updates on how I progress in future. I saw the doctor today. She took me off of Lisinopril and started me on Amlodipine for BP (5mg) and Furosimide (20mg) as a diuretic. My blood thinner is Edoxaban (60mg). I asked her about activity and was advised to do as much as I felt able. To an extent a number of us react in different ways to the drugs. Try and stay positive. Go further north for your ski-ing. More snow and lower altitude. Not necessarily Scotland though! Cheaper than the European Alps .

Cheers

gbn_ profile image
gbn_

Hello. I can really relate to this post. Really feeling a bit off from current medications recently prescribed for AF. Was in hospital last month for a week due to it, went in to have them check on leg and foot swelling which turned out to be caused from fluttering of heart (which I didn't feel) brought on by AF. Thought for sure swelling was caused by a blood clot, but it wasn't the case. Prescribed Metoprolol 50 mgs twice a day, Furosemide 40 mgs. once a day and Xarelto 20 mgs. once a day. After first visit with nurse cardiologist in office she checked vitals and found heart rate was elevated a bit more than she would like it to be, so she added another 25 mgs. of Metoprolol to be added twice a day so now I'm taking 75 mgs. of it twice. I don't know if it was the right thing to do actually, because I'm usually always a bit nervous about doctor visits, and I can honestly say that I was nervous just being there for AF. It's been about a month now being on the meds, and it's been a bit rough with side effects, just not feeling right, I would like to re-join my gym, but I can tell it's not going to be like it used to be there for me, I seem to get tired more easily, so usual pumping iron will suffer, and I'm a bit worried after reading that going too hard can make AF worse, also not sleeping well, possible side effect of Metoprolol. Actual appointment with AF cardiologist will be in a few weeks, I'll see what is said then, I really dislike this tired-off feeling though, it's depressing.

MountainGuide profile image
MountainGuide in reply to gbn_

Thanks,I've copied and pasted my latest reply here. I've had dozens of people wanting to relate with me, which is great. I'll try and keep the forum updates on how I progress in future. I saw the doctor today. She took me off of Lisinopril and started me on Amlodipine for BP (5mg) and Furosimide (20mg) as a diuretic. My blood thinner is Edoxaban (60mg). I asked her about activity and was advised to do as much as I felt able. To an extent a number of us react in different ways to the drugs. Try and stay positive.

Cheers

Yuatt36 profile image
Yuatt36

Yes I feel the same. I have had AF for7 years, had 2 Ablations 1 Cardioversion and now this year a Pacemaker. Still have AF which makes me very tired, no improvement . I am on

Blood thinners, Perindopril, Bisoprolol. Can’t do what I used to do because I get breathless and lack energy. Used to be always on the go. I am 81 and because of my age Doctors don’t seem interested. My heart is enlarged due to high blood pressure and AF it can’t work properly. At my age can’t expect a lot but at your age it’s a shame. My friend is on the same medication with AF and experiencing the same symptoms, she is 58 still trying to work but always tired. Is it the medication I don’t know. A nurse told me that when the heart is in AF it’s like running all the time without a rest therefore it will make you very tired. I do hope things improve for you soon. Enjoy Christmas!

MountainGuide profile image
MountainGuide in reply to Yuatt36

Thanks Yuatt36, I saw the doctor today. She took me off of Lisinopril and started me on Amlodipine for BP (5mg) and Furosimide (20mg) as a diuretic. My blood thinner is Edoxaban (60mg). I asked her about activity and was advised to do as much as I felt able. To an extent a number of us react in different ways to the drugs. Does your pacemaker help at all?

Cheers

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