Aflutter getting me down. : Hi I would like... - AF Association

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Aflutter getting me down.

emmap985 profile image

Hi I would like some advice. I have had Afib for 5 years and was managing well on Flecanide. I had the odd breakthrough but as a whole I coped well on the drug. Then I developed atrial flutter out of the blue. I am not sure if Flecanide caused it or not. Since then I would say things have been tough. I was put on the wrong drugs last summer digoxin and Xarelto and neither helped. I bled heavily every month on Xarelto and became severely anaemic. When I saw a EP he said that Digoxin was probably making the flutter occur more often and switched me to Apixaban and a lower dose for monthly cycles and that has improved. But then I was put on Sotalol. Only 40mg twice a day and then gradually on to 80mg twice a day. It hasn't totally stopped the flutter at all. I go from NSR to flutter alot in the day and especially in the afternoons so much so I take the second Sotalol 80mg slightly earlier than 12 hourly sometimes after 8 hours. Usually battle with flutter in the evenings and always up to 140 beats a min. I have no idea what conduction level I have eg the speed etc per minute. Surely having your heart doing 140bpm isn't good for the heart muscle and will wear it out. At least when I was on the Digoxin it was under 100 beats. My cardiologist can't see me until October and also hasn't suggested increasing the sotalol. I also was told I'm not a candidate for Cardioversion as I start the day off in NSR and then go in and out as the day goes on. Would Cardioversion actually help. I have to lose weight for the flutter op as too high a BMI. Is it really dangerous to go back on to Flecanide? It worked so much better. I now seem to get a racing heart doing the simplest tasks just getting up and walking around. I just worry about my heart muscle wearing out and causing heart failure. Did anyone else find Sotalol made Flutter worse? I'm 47 years old. Female. My mum suffered from Afib. Any advice would be appreciated. Afib for me was so much easier to cope with. I'm at my wit's end.

34 Replies

Hi Flutter is harder to deal with as faster rate- Sotalol is not used much now so definitely get your meds reviewed. If your BMI is so high I would concentrate on losing weight as this can often stop arrhythmia and high BMI does mean surgery won't last Ask whoever was doing the surgery about meds- the EPs often are better at the meds needed.AF nd Flutter are often linked and one starts after another rather than caused by, main thing now is healthy diet and weight loss- get you GP to help with weight loss proper planning with nutritionist

emmap985 profile image
emmap985 in reply to rosyG

Hi Rosy yes trying to lose the weight and I know if I can get the weight down it will help me alot. Then hopefully I will be able to have a flutter operation. Thanks for your advice. 😊

I have Aflutter had an ablation in Feb 2021 I was put on Metoprolol 100 mg per day and continued using Sotalol 160mg per day.

emmap985 profile image
emmap985 in reply to bmand

I hope your recent flutter op has helped and you have the right drugs for you as we are all different. Hope you continue to feel well.

Not sure what your normal diet is but top of my list would be reduce gluten by 90%, sugar by 75%, minimal processed food from the supermarket, reduce red meat by 75%, DO have full fat dairy as long as quality (i.e. organic, all grass fed from a local farm) and walk 1 mile early before breakfast and one mile before evening meal. I have done this for 10+ yrs, its not really hard but it does take time finding the right places to buy good 'clean' food. My weight is down to the same as when I was 18 and a BMI of 22. Although I take 200mgs Flecainide I think diet and other Lifestyle changes I have made are of equal importance.

maxred1 profile image
maxred1 in reply to secondtry

I would second this 100%. Like emmap I have the lot. Abnormal arrhythmia, flutter permanent afib etc. I have been in this state for 5 years and am highly symptomatic, however over the long term I have lost weight, changed to a more clean diet, non processed, and I think I am in a better position. I also walk and remain very mobile. To me this is the only way to regain some QOL. My meds are still high, Digoxin, Bisoprolol, but I have to accept this and as long as I can feel better then that is the way it is. I have also ridden myself of ANY stress inducers. That includes people, mostly people, and that has had a great benefit. Like life it is a constant journey, however find what works for you, do not rely on Doctors, and look inward. I cannot have an ablation, have had two failed cardio blasts, and need to steer the course I am on. You should be able to find the path to a better QOL. Steve

emmap985 profile image
emmap985 in reply to maxred1

Thank you Steve good advice. I am glad you have found changing your lifestyle has helped you have QOL. Frustrating you can't have an ablation but you have looked at other ways of reducing stress and doing lots of walking and being mobile which clearly helps. Hope you continue to feel well.

emmap985 profile image
emmap985 in reply to secondtry

Thank you I am trying to walk more and eat healthily.

emmap985 profile image
emmap985 in reply to secondtry

Thank you I am trying to walk more and eat healthily. Glad that the combination of good diet and the lifestyle changes are working for you. Hope you continue to feel well.

Sorry to hear you are struggling with your meds and flutter. Personally I believe that with any cardiologist they have to try mixture of all meds to get it right for the individual as we are all so very different and even then I think diet controls the meds as well, and this takes a lot of time and patience something I appreciate they sadly don't have enough of.; trying different meds has certainly has been a big part on my AF journey. I had an ablation for AF and then had to have a second one for Flutter, it did come back but my Amiodarone and now Dronedarone are really helping. I have been on Flecainide , Bisoprolol and Sotalol , the latter I believe gave me weight gain! As a side note my sleep apnea had not been diagnosed for years and in the opinion of my current cardiologist is the reason I have AF , I was not overweight so the Apnea was missed. I agree with the above reply totally about diet as goodness where I would be now if I hadn't given up caffeine and alcohol and fatty food. Wishing you well.

Thank you for your advice. I have also not had caffeine alcohol or fatty food since being first diagnosed. Interesting how even people with a healthy weight can still have sleep apnea. I hope you manage to stay well.

I found AFl much more difficult to deal with than AF so feel your pain! So difficult.

My understanding is that Flecainide isn’t the best drug for AFl - I was taken off it as soon as I developed AFl.

On the positive side - the ablation for AFl is much easier and often successful 1st go so as Rosy says - focus on getting that weight off and go find a good Nutritionist (not dietician) and ensure that your nutrients is excellent, good enough is not enough and advice from Secontry is worth trying. Certainly cut carbohydrates - all if you can - cut anything white - bread - all biscuits and pastries, rice, potatoes etc, etc. I found carbs made my stomach full, irritating the vagus nerve making everything worse and gave me acid reflux on top - that would trigger the arrythmias. The usual suspects such as coffee, tea, alcohol and sweetners - consider no gos.

If acid reflux happens to you as well tips:- eat 4 smaller meals a day; eating higher fat/protein and no carbs diet means you will stay satiated so won’t be a s hungry. Don’t eat within 3-4 hours of bedtime. Going for at lest 12-14 hours without eating at all will bring the weight off quicker eg:- last meal 7pm - don’t eat anything until 9am following morning. If you get acid reflux sip warm water and keep taking sips until it goes, swallowing saliva also helps.

A Nutritionalist should start by testing and may advice supplementation.

Anecdotal evidence from many on this forum suggest Magnesium supplements help but do your own research and be aware of any contra indicators such as kidney dysfunction other conditions etc. I can’t take Magnesium orally but find Magnesium Spray works for me. One symptoms of Magnesium deficiency is muscle cramps, especially at night.

All learned through experience and know I have had one very short episode of AFl in the last 3 years so solutions do happen! PS - my experience was that drugs enhanced my arrythmias and worsened my quality of life - they just did not work for me period. I haven’t taken a heart drug now since 2014 and feel so much better in myself.

Best wishes CD

emmap985 profile image
emmap985 in reply to CDreamer

Hi CDreamer thanks for your advice. I also had a month off from taking any heart meds and even though I had blips I did feel better. I do also take magnesium although split the tablet powder in two doses as too much magnesium can cause me more flutter. I haven't tried the spray but will look at buying some. I know not eating late also helps and having a long window of no food. I hope you continue to feel well

PS - re RubbyMurray’s comment about fatty foods - there are good fats and bad fats. Fat is the most important nutritient but comes in different packages so good fats come from good food - Avacados, nuts, Olive Oil, seed, oily fish and butter etc but bad fats = anything fried, anything processed. Carbs are the enemy rather than fat but obviously quantity is essential.

emmap985 profile image
emmap985 in reply to CDreamer

Hi thanks for the advice. I do tend to eat the good fats and enjoy olive oil salads and tuna fish. I do love carbohydrates like jacket potatoes and pasta but know I do need to cut down on those and bread I always have seeded brown bread. But I know more protein and less carbs is the way to go and healthy fats. I don't tend to eat fried foods or anything too processed.

Hello Emmap, I am a little like yourself, AF started after I dislocated my hip, and after two ablations seemed ok for a few months. Then back again and also Flutter began and is constant. After much discussion with the Cardiologist I now have apacemaker fitted (one week ago) so after 5 weeks will have an ablation to then become dependant on the pacemaker.

My BP generally seems ok but my pulse varies from 90 up to 130. Prior to these episodes my pulse was around 55 to 70.

So all is not lost for you, discuss your issues with a Cardiologist. They are the best people to talk to as a GP is not a specialist.

Best of luck

Dave

emmap985 profile image
emmap985 in reply to Golfer60UK

Hi Dave sorry to hear your AF started when you dislocated your hip. Flutter is so stubborn and persistant and even trying all the ways to calm the heart doesn't work. I am glad the pacemaker is working for you. When you have a final ajustment of the pacemaker will it then lower your heart rate so you don't have to cope with it as high as 130? Wishing you all the best.

CDreamer profile image
CDreamer in reply to emmap985

Pacemaker will not slow HR per se so it may not help AF/AFL - but it will mean if you have Pace & Ablate - you will be totally Pacemaker dependant as the PM will be in control & your pulse will be steady. Af

However, Pacemaker alone seemed to work for me & a few others I know but that was because my arrhythmias were triggered by my HR dropping during the night. As soon as my heart was paced I felt much better & AF/AFL disappeared.

I had an ablation for atrial flutter in 2019. I think that's the way to go if you get the opportunity. I was told that flutter is resistant to drug treatment, and, for some reason, I wasn't allowed sotalol. What eventually did get my heart rate down (but did nothing for the flutter) was when a kind chap here told me about digoxin. Even a tiny dose of that wonder drug did the trick for me and stopped the tachycardia in its tracks. Of course, it brought my blood pressure tumbling down, too, and that brought its own issues. If you look back at my early posts, you'll find that I struggled badly throughout with side effects and symptoms, so I do have an idea just what you are going through and putting up with. The ablation sorted the flutter completely, thank goodness.

These days, I still occasionally get a high heart rate of 120-130 bpm, even after just a little activity and this makes me feel drained and anxious. At the grand old age of 67, my days of enjoying working hard on DIY and the garden are becoming a memory. A recent two-week heart monitor pointed to the cause being short 10-15 second bursts of fibrillation. Such fun.

I gather you need to lose weight. I could do with losing a stone or two myself, but at 6'4" and just under 16 stones, I suppose I'm okay. My wife's late Aunt Beryl ran the area's most successful slimming club for many years, and she had just one method: eat the same foods as you do now, but reduce the quantity a little. She used to say that all "fad diets" were designed to fail and that her way never did. Her way was slower, but the weight stayed off. Judging by her own success at keeping slim and her legions of followers, I have always thought her method was the only truly successful one and it makes such logical and scientific sense. She used to say that there was no point in blaming "metabolism", "hormones" or whatever and believed solely that if calories being eaten were more than calories being burned, then weight would pile on.

Steve

emmap985 profile image
emmap985 in reply to Ppiman

Hi Steve thank you for the advice about slimming down. I know that is going to help me the best. Also glad to hear that Digoxin worked for you. I can imagine you get anxious when it is occasionally fast but I suppose you know to rest and take things slower not gardening as much or over doing it!

I had my 1st ablation for Atrial Flutter but they will need to do a 2nd ablation. I need to loose weight before this will be considered.

Hi I am going through the exact same thing as you. My heart rate for the past 3 days has been uneven so a fib I guess. Then everytime I move even turning over in bed HR jumps straight up to 140 for several minutes a d I get really hot. I really don't know how to handle this. Only see a cardio twice privately and have now booked a private EP next week. Almost a grand on 3 appointments. All because like yourself no NHS cardio will see me in my area for 10 months. So frustrating.

emmap985 profile image
emmap985 in reply to ETHEL103

Hi ETHEL103 I totally sympathise with you. It's horrible isn't it? I am glad you are booked in to see a EP and even though privately it means you don't have to wait. I am looking in to this also as my partner and I have some Bupa health cover with his work. I hope you don't have to wait too long to see the EP and get sorted.

ETHEL103 profile image
ETHEL103 in reply to emmap985

Next Thursday.

I had an ablation for Aflutter in January, best thing I’ve done in years. Only drugs I’m on now are Ramipril and Dabigatran.

Occasionally, when the flutter got really bad 111 would recommend A&E. Not a route I would normally recommend but if you feel really rotten and incapacitated then that’s what they’re there for. It might also get your October appointment brought forward a bit.

As to losing weight, my husband and I both lost over three stone after I bought all the Hairy Dieters cook books. I can’t praise them enough, they even do a veggie one. Most of the recipes are for four people so I would just freeze half. Great because on days I didn’t feel like cooking, hey presto there’s already something in the freezer.

We did also walk a lot, a habit which has remained.

Good luck.

Thank you for your tips on cooking healthily.. I love the Harry Bikers books have one of the diet ones. So good to hear your ablation for flutter was successful and well done to you and your husband losing all that weight ! Walking also works wonders !

Hi Emma.

What an interesting thread. I too went in to flutter and they stopped the flec - it had worked so well for a few years but said it 'might' be the cause of the flutter.

Might not be as well. A small dose of beta blocker alongside it might have been a good idea too. Still with hindsite and all that !

However like you they have put me on Sotalol. I started on 40 mg twice a day (maybe about 5 - or 6 weeks ago) and was told yesterday by phone to increase it to 80 mg twice a day. This 'jump' concerns me a little. So here's a question for you - you wrote

"Only 40mg twice a day and then gradually on to 80mg twice a day"

Gradually is the keyword here for me. Did they increase your dose bit by bit ? For example 40 mg to 60 mg to 80 mg over a week or so - or were you told to just double it there and then ?

Cheers Paul

emmap985 profile image
emmap985 in reply to Paulbounce

Hi Paul, Sorry to hear that you are going through the same thing. Flutter does seem to be very stubborn. I had an ECG to check everything was ok after being told to start 40mg of sotalol morning and night and then after that because I was still having flutter break through I wrote to my cardiologist who wrote back and I received a letter from her saying to increase it to 80mg twice a day if I was still having symptoms. I've tried 80mg twice a day for about three weeks and still not much joy with getting rid of the flutter. I go in and out of flutter and then it comes back a few times a day. I then received another letter with an appointment for October which seems so far away. Now wondering whether to go back to 40mg. I was also hoping at one stage she would increase it even more but maybe 80mg is safer than upping it higher before I see her again. I hope the sotalol is helping you and you are able to increase it gradually and see how you go.

Paulbounce profile image
Paulbounce in reply to emmap985

Thanks Emma for your reply.

I think waiting until Oct is to long for you. Certainly if your hitting 140 bpm at rest. Tell you what I would do - head off to A&E the next time it happens. Sorry but I wouldn't find that acceptable and it might push things forward a little quicker if you do.

Personally I'm still on the fence regarding Sotalol. I'll give it a few more day's to see how / if it works. I'm a little on edge at the moment regarding doubling the dose - however I'll wait another 3 or 4 days to see what effect it has.

If no joy I'll go in to 'pest' mode and be on the phone again to the doctors. I suggest you do the same - we only have one heart and it's very important to get things right with it.

Hope you get it sorted soon ;-)

Paul

I was told that when taking flecainide you should also have a beta blocker so I am on Flecainide 50mgs twice a day and bisprolol 1.25 mgs once a day. Hope you feel better soon

emmap985 profile image
emmap985 in reply to Tapanac

Hi Tapanac when I was able to have Flecanide safely before the flutter I also took Bisoprolol. But somehow was unlucky that after 4 years flutter started. I hope your meds are working well and keeping you well.

After a successful Cardioversion, Afib returned 2 weeks later. Increasing Sotalol gave me terrible side effects. Cardiologist wanted to change meds but it appears I have issues with most meds. He reduced Sotalol from 120 mgs. to 80 mgs. I added in Magnesium and other supplements which brought me to infrequent flutters. This was a better QOL for me. I too was concerned about too much Magnesium intake but read that only a small percentage is absorbed and the rest is lost in urine.

emmap985 profile image
emmap985 in reply to Dee5165

Hi Dee5165,So frustrating for you to have a Cardioversion and then for it to come back so quickly. I do believe the magnesium helps a great deal and interesting that increasing the sotalol for you made things worse. So just goes to show taking magnesium can help. I hope you continue to feel well.

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TracyAdminAdministrator

Hello there, I am sorry to hear you feel down, if you would like any advice or support, please contact our patient services team at the A F Association. We also have many online helpful booklets and video presentations too heartrhythmalliance.org/afa...

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