I am a 73 year old female and I have had AFib for 12 years. My problem is with rhythm, not rate. Just had a cardiology consult after going back into AFib after 18 months on Amiodarone, following my second cardioversion. Quite depressing really. Told to come off the Amiodarone, as it wasn't keeping me in sinus rhythm, and the side effects can be quite serious. Cardiologist didn't think it was worth me having a 3rd cardioversion as it probably wouldn't work. Can't have an ablation as I carry a lot of fat on my lower tummy due to Lipodema ( lymphatic disease, which doesn't respond to diet or exercise) and was told that ablations carry a lot of risks ( just to make sure I didn't want to push for one!) Cardiologist has given me Diltiazem, which I'm not sure I should take at the moment, as I will have the Amiodarone in my system for the next 3 months ( or longer) and Amiodarone and Diltiazem are not recommended to be taken together. Asked if my symptoms will get worse over time and she said they often improve, which I find hard to believe. She discharged me from her clinic, so it was a case of here's the tablets , off you go!! Cynical husband said, 'that's one less on the clinic list now.' She told me to go off and enjoy a normal life, which isn't that easy when you get breathless walking up hills and you feel fatigued. So, farewell Sinus Rhythm , look I will be in permanent AFib forever now. Anyone got anything to cheer me up!!
Depressing cardiology consultation - Atrial Fibrillati...
Depressing cardiology consultation
Are you saying you have low rate AF?
I have low rate and now in permanent low rate AF and although I do get breathelss quicker than I normally would pre AF I can do all the things I always did - just takes me longer sometimes - but then i am older than I was back then too :). My normal resting rate is in the mid fifties and I exercise at least every other day in the gym and my rate only goes to around 120 for short intervals. What medication are you taking? As my AF was low rate the worst thing I took was a beta blocker or other such rate control medication as it made me feel worse than the AF on its own and at one time took me down to a HR of 36. After they tried all sorts of beta blockers, calcium channel blockers and a mix of all sorts of rate and rhythm control medication finishing with low dose digoxin - which was the only one that didn't make me feel worse but didn't make me feel better either, I stopped taking them and am now only on anticoagulants and generally am OK apart from getting older and grumpier.
Hi there, I've never had a fast heart rate and my resting heart rate is around 60. The problem is that my pulse is irregular. I too take an anti-coagulant, and meds control my high blood pressure very well. I think I may well wait before taking the Diltiazem to see how things work out. Thank you for replying.
Yes my pulse is irregular too but I find this easier to deal with than I think paroxysmal would be and high rate would be - although I didn't like it when my rate went down to 36 and went to A&E where they told me it was no problem really - well I suppose it's no problem if you feel OK but I felt dreadful! I would ask your pharmacist about taking the diliatzem as well as they know about dosage and when to take. Have you actually seen an Electrophysiologist (EP). You may get a totally different take from them.
I would check to see if you have a BHF Phase III heart rehab class at a local gym or any other such rehab class run by the gym as this was a great help for me. As it helped me get back to exercising as normal despite the AF and trouble with medication. We started off doing light exercise (really light exercise for me) under the direction of the hospital physiotherapist and monitored by a cardiac nurse for about an hour and then had talks from various health and medical professionals about various heart problems, medication and treatments. It was a lovely way to spend part of a Wednesday afternoon and my wife was able to go and do shopping and wander round the shops and have a coffee and enjoy herself whilst I was there. We then graduated on to using the gym under supervision - my favourite time I only did this for a short while as I became a member of a different gym and carried on going there.
Good Luck.
I had a third cardioversion which lasted 15 months and missed out on ablation as it was cancelled due to lockdowns ( I should have had my ablation the April after we went into the first lockdown) and then the 3rd time it was cancelled because 15 patients and 20 staff in the cardiac unit came down with Covid and it was closed - this would have been October 2021. At the time I was still in NSR following my 3rd cardioversion but when we got out of everything the following year my EP was loathe to start down the ablation route as all scans etc had been done more than two years prior. Had them all again and found that my heart had - despite the 3 cardioversions and pretty much 3 out of 4 years in NSR had re modelled itself and therefore an ablation or further cardioversions would be most unlikely to work. This was confirmed by the Professor at the University hospital when my EP worked.
Hi, I've actually seen 3 EPs over about a 4 year period. 2 said i would be suitable for an ablation and the last two said I wouldn't. They said I carried too much weight around my abdomen, making the procedure tricky. Mind you it's hard to put much faith in a doctor who gives you a dozen reasons why you wouldn't want to have an ablation, then tells you, 'Just go and enjoy life, you could have another 40 years ahead of you.' My reply ' I'm 71, I doubt that very much !' Some of these consultants are numpties. They tell you about medications you have had in the past, only you have never had them. You must have been disappointed that Covid messed up your chance of getting an ablation. I have no idea if my heart has remodelled itself . I had an Echo ultrasound of my heart 3 years ago and all was fine, but things may have changed in that time. God this A Fib is a real pain in the ass.
"God this A Fib is a real pain in the ass."
I couldn't have put it better myself! 😂 I don't have anything useful to add but I just wanted to send you a metaphorical hug, and to say I totally understand how you're feeling, it sucks all round. And talking to a doctor who patronises you and says stupid things doesn't help. Talking to a pharmacist about the medication is a good idea. ❤️
Hi TopBiscuit, thanks for the metaphorical hug. I'm actually feeling a bit better today. Only AFibbers understand what it is like to have it and how it affects your life and yes patronising doctors don't help. I ought to have reported the EP who did my 2nd cardioversion . She came to my bed after I'd just come round from the anaesthetic and said 'We can't keep doing this you know ( in a cross voice.) You need to lose this( waving her clipboard over my abdomen.) I said' I have Lipodema.' Her reply, 'we're not interested in how much fluid you have in your legs!! The woman was confusing Lipodema with Lymphodema. There were 2 male patients close by and it was embarrassing. Then she said,'you'll be taking Amiodarone now.' I replied that I'd been told I would have dronedarone . Her reply 'it says here in your notes that you'll be having Amiodarone. Oh, but you should really have started that 4 weeks ago before you had this cardioversion if you were to have Amiodarone! Anyway, you're having Amiodarone, as it's much better at keeping you in sinus rhythm. Oh and make sure you have a blood test every 6 months to check your liver.' And off she went! On doing some research I discovered that patients are supposed to have an in depth discussion about taking Amiodarone with their doctor, as the side effects are really serious. I still feel cross that I didn't report her. Water under the bridge now. If I feel I need to see another EP I will go private. Sorry about the long reply. Best wishes to you.
Funny thing is, nearly every cardiologist I’ve seen has dissed ablation (sorry, seemed best word 😂) while EPs only mention any downsides when you sign the form! Cardiologists seem to think that if it isn’t a permanent fix like a stent or pacemaker it’s not worth the risk, for anyone with comorbities at least.
Btw, I take diltiazem and it’s quite effective for me, your cardiologist should know if there’s a problem with starting now.
Hi Buffafly. The cardiologist just said that I would have Amiodarone in my body for three months, but didn't tell me not to start the diltiazem straight away. I read that some cardios prefer to wait for a 'wash out period' of the Amiodarone for a month, then start something new, but others don't bother. I'm inclined to wait and see how I get on without the diltiazem . Did you have a rate or rhythm problem? Thanks for replying Liz
Both, but rhythm meds were stopped for some reason. Not sorry because the one I was taking made me feel awful!
May be best to seek a second opinion from another cardiologist and EP, then compare and make decision about future therapy. They may further evaluate if an ablation or minimaze procedure could be performed.
Has your GP or any doctor suggested treatment for the lipodema like liposuction or any other procedure ?
The HNS treatment for Lipodema is Compression Tights. The Gold standard treatment is a very specialist liposuction which is only performed by two or three trained surgeons in the Uk ( as far as I know.) The cost of having your legs done privately is around £10K. When you consider that 11% of women are estimated to have the condition, it shocking that the NHS don't provide proper treatment . Manual lymphatic drainage can help but our local Lymphodema clinic has a very long waiting list. Thank you for replying.
I am early 70’s and cannot take any heart meds at all and it’s 10 years since I did so my EP recommended me for Pace & Ablate with Resynchronisation 3 lead Pacemaker. My AF burden is currently less than 2%. That worked so well that I never had the Ablation of the AV node - but boy did my EP have to fight for the funding!
I would ask about Pace & Ablate, it may not stop your AF but you will have a regular pulse and most people find it improves QOL. The down side is that after ablating the AV node you will be 90% pacemaker dependent.
Maybe read up about it?
Hybrid mini maze is the other alternative, if you a suitable candidate - I would never have been.
Hi there, certainly something to think about in the future, if things get worse. Thanks.
Hi there, sounds a bit scary being 90% pacemaker dependent. I will do some reading about the Pace and Ablate, because I think you can never be too knowledgeable about any condition you have. Thanks for your reply.
Have you had a consultation with an EP (electrophysiologist) as they are best for heart rhythm problems?
Hi, I've seen 4 EPs. Two came up with giving me an ablation, if the cardioversion didn't work. They didn't , though the second one lasted the best part of 2 years along with amiodarone. Second one failed and two other EPs have said not worthwhile having another cardioversion and sorry you're not a candidate for an ablation, which surprised me as the other two thought I was. If my health gets worse I will see someone privately and get another opinion. Thanks for replying.
Good luck with improvement
I am a 78 year old female and went into permanent afib about 3 years ago. The EP did not suggest cardioversion. ablation or anything else but left me to get on with my prescription of edoxaban and bisopropol (he wanted me to be on 5mg of bisopropol but seemed to be happy for me to find my own path.)
I play golf, do yoga, gardening, some swimming and cycling. Gradually I have reduced the bisopropol to just .62 of a tablet.
I don''t seem so breathless though I find I run out of steam when gardening and golfing so just take a breath then carry on. My resting heart is about 80 and goes up to about 135 when playing golf, gardening etc. I keep checking it and it gradually goes back down to the 80s.
I feel at 78 that I have a good quality of life and although I often feel my heart 'blipping' I just ignore it and get on with things and I'm still here. I don't stress out about it.
I am thinking of checking out diliatazem to see if this would help control my rate and rhythm better.
Very inspiring positive reply , thanks for sharing your experience with us, Bee
If I can be like you at 78 i shall be a happy woman. Thank you so much.
Have you considered seen a Cardiac electrophysiologist? Have a discussion with your GP about it.
I have seen 4 over 4 years. two were pretty useless. Took 8 years for my GP to refer me to the hospital. When I asked I got answers like, 'What are you hoping to get out of the consultation , they will only tell you to keep taking the Bisoprolol!' Thanks for replying.
You need a referral to an EP because obesity is not a reason to hold off an ablation. Plus an ablation has its risks, but it is a relatively safe procedure and is out patient in most cases. Not sure where your doctor is getting his info...
Hi there, the last two EPs I saw were both adamant that I was not a suitable candidate for an ablation, because of the weight I carry on my lower abdomen, which is due to my Lipodema. If things get worse I will see someone privately and get their opinion. Thanks for your reply.
Hi, after reading your post, and if I was in your situation I would still explore having an ablation. Wishing you well on whatever you decide.
Thank you for your good wishes. I have not given up hope that I can get the right treatment.
Have you heard of Lymphatic drainage type massage? Quite specialist and may not be many who practice this. I know it is practiced on women who’ve had breast cancer surgery where they remove lymph glands.
I had an ablation in February, currently 🤣 wired up with ECG monitor for week till Tuesday to see how it’s ‘worked’. I had it done by Prof Schilling privately, health insurance.
I have PAF, was put on Dronedarone which is the lesser of the evils (Amiodarone) however, that still has a 3 month clearance period.
So far I thin so good 🙏🏼
Thanks for replying to me. You were lucky you had it done privately. I hope everything works out well for you.
Hi dizzie. I am in a similar siruation as you. I was running abou 10 to 15% AFIB rate. All of a sudden, mine jumped to 100%. The symptoms are horrific as i have had no energy, shortness of breath, extreme fatige. I am working with my cardiologist and EP to try to get me out of AFIB. Two things have been proposed. I can't have another ablation due to my having a Watchman implant. So my drs are recommending a chemical cardioversion using dofetilide.. i would have to go into hospital for 3 days while it is done due to risk factors. The second is pacemaker with AV node ablation. This oneconcerns me more because after the av node is destroyed, my heart w I ll never beat on its own again. The pacemaker alone causes the heart to beat. Do you know about these procedures? You could seek another cardiologist and/or EP and go for a second opinion. Ask about these procedures or any others. I understand your situation very clearly. It is not easy being a member of the AFIB club. But try to keep your chin up and keep pushing forward. There are a number of us who are behind you and want you to feel better.
Jodie @ n400033
Hi Jodie, I read your reply with great interest. I had read about dofetilide in an online article, and the results looked good, but was under the impression that it was not available in the UK. My hospital doctor has just prescribed Diltiazem and discharged me from her clinic, so I won't ever see her again!! In fact I haven't taken the Diltiazem and have just continued with the Bisoprolol and don't feel too bad today. I do hope that whichever treatment you decide upon is successful.
hi hopefully there’s a light at the end of the tunnel. I went to cardiology department this Tuesday 8May , I was advised to stop taking the Amiodarone as my heart was beating too fast and to start taking Bisoprolol, so I am now taking it .
I have had blood tests and an X-ray Friday, I will have to wear a heart monitor to check the heart rate.
This Amiodarone has affected my thyroid possibly my lungs and liver. I’m glad I’m off it.
Up to now I’m doing ok.
Sorry for rambling on. Good luck.
Hello, yes you have to be well monitored when taking Amiodarone, though it kept me in sinus rhythm for the best past of 2 years. I am now only taking Bisoprolol 1.25 mg and I don't feel too bad today. You take care of yourself.
I've been using a Muse headband and meditating a little lately. The thing is, my mental calmness scores (yes they keep score-not very Eastern of them) go up when I'm in an upbeat mood. I know somebody mentioned it already, I'm just adding, think happy thoughts, do happy things, it can only help.
Good mental attitude and remaining positive can help tremendously. Take care.
I am terribly sorry you were treated that way. It’s just wrong. I know they can switch you around. I’ve had it done. I had to go off amiodarone relatively fast. about four months I was so sick. I have been on Metropol ever since and doing well. Just dosage changes no side effects that I’m aware of and who can tell what it’s from anyway they all have them. When I had my cardioversion fail, they had such a hard time getting me back they will do no more. It took three tries to get me started the way I should be. I had tachycardia from day, one of a fib, usually 160 or higher nonstop. They were going to try me tikisyn ? Sp
Because of what happened during the cardioversion, everything else was called off and considered dangerous for me. Valentine’s Day was my new beginning. I got a pacemaker. I didn’t just say yes my doctor had all the right reasons and answers. Besides the fact there was no other choice for me and there was no pacemaker. He actually devised one for me. I am considered unique according to him and the tech From the company who is assigned to me in the past year I’m hoping they are doing more with HIS bundling and more. My wiring is like no other or it was then he was invited to a hospital in Dallas to teach the EP staff there similar to what he did for me in hopes of saving more people.
do not give up. I know your medical is different, but don’t just walk away after being treated like that it’s your life. FYI, you may still be breathless, etc. I am not gonna be running any marathon but before my p.m. to stand up from the couch to try to get to the bathroom would bring me to tears with the pain in my chest and everywhere. now I get up throw something on to take my dog out first thing in the morning. I am not greedy. I will take that as an accomplishment it doesn’t hurt and I can breathe. You can tell when you are overdoing. I tend to become nauseous even now.
Please do something and find another doctor if you can
Oh my goodness Dawn. You have been through hell. My problem is insignificant compared to yours. I do hope that you continue to feel as good as you do now. God bless you .
Not sure how much I can cheer you up , but I am in permanent AF and I have a pacemaker that controls the rate along with medications. I had 5 cardio versions and none worked long enough to keep be in normal sinus rhythm. On an oral blood thinner, blood pressure pills 2x day and one thing that really helps my body is working out in the pool. I go to a YMCA that has indoor and outdoor pool. They have classes for arthritis, areobics, and you can just walk in the pool. It has helped me so much. I started back to the pool by just walking and then I did the arthritis class because it is designed for slower exercises of which I would highly recommend. Now I work out 1 hr and up to 3 days per week. I love it and it helps the fatigue level, relaxing so is great for the B/P in addition to medications. Start with baby steps. Find a EP cardiologist for they are the ones that deal with AF. Mine was diagnosed 6 years ago and I will be 73 in a couple of weeks. I am a retired RN and if you want to send me an email happy to respond.
Hi there, I totally agree with you that it's important to keep up with the exercise and I need to get off my behind and do more. I live in the Cotswolds, which is a beautiful area , where there is a lot of opportunity to walk, but because I started to get breathless I gave up. I have arthritis too ( my mother always said old age doesn't come on its own.) I used to go to a aqua exercise class, which I enjoyed and swimming is so good for arthritis. I am so glad that your unique pacemaker is working for you and that you life has improved. Thank goodness you have a very skilled EP. Do take care of yourself, and thank you for your kind reply.
Hi
But you won't be taking am... and Diltiazem together.
You are concerned that A... will still be in your blood.
BBs and CCBs don't mix so I don't take them together.
I take CCB Diltiazem AM 120mg controls my heart rate and also keeps the heart rhymn at bay.
I take Bisoprolol BB 2.5mg at night controls my BP in hypertension.
I've never looked back. My H/Rate at night is 47bpm and no matter what drug it stays there,
Your cardiologist has an idea to solve it. Try it. CCB Diltiazem was a med which I hold with great respect. Within 2 hours 180mg brought my H/Rate down to 51 and therefore slowing down rythmn within 2 hours.
But we brought down dose from 180 to 120mg.
I have been taking this combination for 2 years 6 months.
Heart at rest is nows 60s Day and 47bpm Night.
Have faith in your Cardiologist.
cheri JOY. 75. (NZ)
Not sure who told you that you can't take Amiodarone and Diltiazem together ? I have, with no issue, on and off for about 5 years and I know others who do as well....... both meds prescribed by an extremely experienced EP. Was this something you have read rather than being told that?
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