Persistent afib treatment options, can't tolerate Amiodarone - so many questions...

[Efka]

I'm feeling rather lost at sea, I have so many unknows and questions so I'm sorry if this is a bit messy. Think I'm looking for your experiences and help with what I should ask the cardiologist about/for. BTW we live in the England so NHS.

In short... Persistent new onset afib (always bradycardia) since February with probable artial flutter too, with debilitating 24/7 symptoms. Plan was take Amiodarone then cardioversion. My husband can't tolerate Amiodarone (tried twice) so we are now a bit stuck and waiting for the hospital to get back to us.

To add to the picture he has heart failure with reduced EF, after researching I'm thinking this is why no other rhythm medication has been suggested?!?

He's already on Apixban for the heart failure so that's not an issue.

Now the longer story... He had an two lead ICD implanted beginning February and immediately went into afib and a got a whole list of weird symptoms. The symptoms have been the same since then. They did a cardioversion beginning March and NSR was achieved for less than 24 hours.

I'm still not sure all his symptoms, and the fact they are 24/7, really fits with afib and flutter but I don't know enough??? I understand heart procedures are know to trigger afib so I don't doubt that. I just have this niggling feeling the leads are either doing something they shouldn't or are maybe not quite where they should be.

His bpm is mainly in the 50s sometimes 40s and maybe 60s on movement so no high spikes. ICD is currently programmed to kick in at 40. He's had bradycardia for many years, never any symptoms.

He is so breathless/air hunger, chest pressure/pain, struggles to sleep (central sleep apnea I think), struggles to walk (on walking at any pace he gets a hot feeling radiate down both arms), struggles to eat (can't breathe and sometimes difficulty swallowing cold drink/food), can't do anything really.

Before the op he was a very fit and at it 72 year old with no heart failure symptoms or issues. He keeps saying he feels like he's done a 1000 situps his lower stomach muscles ache as they seem to contract involuntarily when he gets odd heavy breathing attacks (I can only assume this is afib episodes?)

If you couldn't tolerate Amiodarone what was suggested or helped?

How can I work out if all the symptoms are due to afib/flutter?

He's already on several supplements for heart health and don't drink caffeine etc so no lifestyle triggers we can see. From some of the symptoms it feels like the vagus nerve and/or phrenic nerve is involved though.

Sorry after 11 weeks of rubbish sleep and sadly a "non compatible consultant" ie I ask questions and believe in nuance and options - he does not I'm pulling my hair and am not sure how I can best help my husband.

Thank you all so much, I know I've rambled.

[Rainfern]

Hi Efka, it sounds like such a rough time for you and your husband and I hope you soon find the best route to a stable condition and quality of life.

I’m a great believer in the doctor-patient relationship being of primary importance and the space to make informed choices alongside medical guidance. The best decision I made in the process of dealing with my own AF was to pay for a private consultation in the first instance. I just felt I needed the time and attention to have a proper discussion and mull over the options.

Everyone has their own experiences with medications. I found the breathlessness and other weakening symptoms of persistent AF were helped with another old-fashioned drug - Digoxin. This strengthens the heartbeat and is often given for heart failure. But so much will depend on what cocktail your husband is already on and his current needs.

Have you tried calling the helplines on AF Association and British Heart Foundation?

[Efka in reply to Rainfern]

Thank you so much both for sharing and your kind words, I really appreciate that.

And the confirmation that I'm not just a "needy patient" is really reassuring. I've dealt with issues for me for decades and I know I have to advocate for myself. Maybe we have reached the point where a private consultation is the next step. We have spoken to Dr Aseem Malhotra previously (around the heart failure) so I know we could go back to him. Would you recommend seeking out a specialist in afib or an EP rather than a general cardiologist?

And I'll look into Digoxin more, I have read good things about it on here before, I'm really glad it's helpful for you. My husband only takes Apixaban and Bisoprolol (low dose at 1.25mg). I try to support with natural where possible so he has been on things like co-Q10, magnesium, l-arginine, hawthorne and basics like C, D+K2, B complex etc for several years now.

I spoke to the BHF nurses quite early on and understandably they couldn't really comment too much nor would they say what "typical" afib symptoms are.

I wasn't aware the AF association had support available, that's fantastic, I shall take a look, thanks!

Thanks again, Eva

[Rainfern in reply to Efka]

Advice on this forum is generally to make an EP the first port of call in all things AF. However, given the additional complexity of an ICD and further heart condition it’s a bit of a dilemma which specialist to consult privately. Does the previous cardiologist you mention have a private practice? You can usually get to speak to the consultant secretaries who can be very useful. They can pass on messages and confer with the consultant then get back to you. So that would be my first route, to call a Nuffield (or whatever) branch near you and let them know you want to book but are unsure who with. Don’t let reception make the decision for you but say you need to speak with someone qualified to suggest your best route. I get that you’re really good at this kind of thing but it sounds to me like you’ve got quite worn down. I certainly would be. I’m very pro NHS and against private medicine but there are times you just got to put yourself first! Do let us know how it goes.

[Efka in reply to Rainfern]

Yes as you I fight tooth and nail for the NHS with petitions and such, majority of the time they are incredible and I feel a crown jewel of ours. Sometimes though longstanding chronic issues aren't easy to deal with very understandably, which I appreciate you know yourself also sadly.

And great advice on the consultant, thank you, with regards to the complexity and questions of what trumps what. I will check with the old cardiologist, I know I could email him and he would honestly say if he is in the best position to help or not.

I stay optimistic, hopefully the hospital will come back with a good plan forward and I can take a step back.

I will let you know what happens. Hugs, Eva

[mav7 in reply to Rainfern]

Efka Excellent advice above by Rainfern. Need an appt soonest.

Also, if not recent ask for an echocardiogram to give full evaluation of heart.

[Efka in reply to mav7]

Ahh yes, brilliant, I was just starting to think that after Buffafly kindly pointed out it sounded like heart failure (worsening) symptoms. Last (and ironically first) echo was done over 2 years ago when HFrEF was first diagnosed.

I will raise it with the hospital to see what they say.

Thanks for your advice and positivity! I shall make sure we get a helpful appointment soon whether at the hospital or private. Thanks, Eva

[mav7 in reply to Efka]

Best to you and your husband !

[Larneybuds in reply to Efka]

I don't know how bad your husbands HF is but it sounds odd that he's only on Bisoprolol and the Apixaban which is for his blood. The big HF drugs are Enteresto, Digoxin and Dapagliflozin, which along with Bisoprolol seem to be the mixture that a lot of people are on, myself included but he might not have been given them for a reason.....possibly because of the ICD??.... Another question for you to ask. It sounds as though he's having a tough time and some of the symptoms to me sound like they need more investigation and consideration but obviously that's only an opinion. Does he have an allocated cardiac nurse you can discuss things with or perhaps try to see the original HF consultant you liked....you can at least discuss if HF is the main contributory to symptoms or if in fact he thinks its the AF. Rainfern seems to have given you some pointers and I'm sure you will get lots of other advice from the forum that can hopefully be of help for you. Xx

[Efka in reply to Larneybuds]

Thank you! We have contact with the Arrhythmia nurses whom are lovely alas after what must be weekly calls and in person visits, plus a few pacing team visits and seeing the consultant - this is where we are. The plan was Amiodarone and another DCCV, now awaiting another plan... No one has questioned or looked at the HF nor any other possible issues. He's had multiple ECGs and the pacing team has read the ICD data that is it. As you and Rainfern say maybe it's time to seek out further help.

He has never had any know symptoms or issues from the HF thankfully, it was only diagnosed by chance 2 years ago after his second stroke and they confirmed the clot had broken off from one in the left ventricle (hence starting Apixaban).

He has been on ARBs for many years but stopped on the recommendation of a cardiologist as he had blood pressure issues (severe drops bi-weekly). Still a possible to go back on maybe Telmisartan.

Dapa he tried twice and again sadly it didn't sit well with him, he just seems super sensitive to medications, both starting them and certainly withdrawls.

Enteresto and Digoxin has so far not been suggested, maybe now with the afib and stuff in the mix they might...

The ICD was "sold" as just a belt and braces, you are fit and not too old so fall within the target group and possibly at slightly higher risk of a cardiac arrest due to your HF diagnosis. It was never meant to do any pacing, but now due to the afib it's pacing quite a lot.

Thanks again for your time and support, Eva xx

[Larneybuds in reply to Efka]

I really do hope you can get some answers and help as it must be so upsetting for you both. I really feel for you. Take care xx

[Karendeena in reply to Efka]

Hi Eva, I paid to see a specialist EP and well worth the money. He sorted me out and finally I had an ablation 5 weeks ago. My heart has behaved ever since ,🤞I have afib and flutter both ablated at the same time. He wouldn't give me Amiodarone says it has very nasty side effects so I expect this isn't helping you. Also, please consider that supplements and anti arrythmics don't go hand in hand. My EP told me to avoid supplements unless I had discussed them with him. Just a thought. I hope your husband gets sorted soon.

[Efka in reply to Karendeena]

Oh my gooddness, well done you, and here's to your heart staying well for many many years to come!

I see several have said about supplements now so thank you I will go back and see. The protocol we used was aimed at general heart health and HF in particular so yes maybe not appropriate now with afib and flutter in the picture.

And after we hear back from the hospital with a "plan B" hopefully this week, if there are still questions unanswered I will seriously look into a private consultation and it sounds like an EP might be a good way to go.

Keep taking care after your recent ablation and thanks again, Eva

[Jackiesmith7777 in reply to Rainfern]

I agree , my husband also has heart failure , long story but can read my previous posts . Digoxin seems to have given him more energy and reduced heart rate 70s up to 90s before he would go up to 130 on a regular basis he is also on another one beginning with c can never remember the name can something

[Buffafly]

Hi Eva, your husband’s problems obviously need expert treatment so I can’t comment on that, but I feel I should comment on a couple of things. One is that you say that he has Apixaban for heart failure but it is in fact to prevent blood clotting and strokes caused by AF. The other is that you should check out all the supplements because I know that at least one (hawthorn) shouldn’t be combined with any heart medication which Bisoprolol is and possibly others may be added. Medications for arrhythmia aren’t likely to be helpful if he is in long-standing persistent AF but an EP may think worth trying. The symptoms you describe are mostly typical of heart failure regardless of the cause but it looks like the AF triggered by the pacemaker is the culprit although a lead problem shouldn’t be ruled out.

I think that if you see a cardiologist privately it would be good to go with an open mind. You have clearly done a lot of research to try to understand your husband’s inexplicable decline, very good and understandable, but if you should arrive with a shopping list of possibilities - misplaced leads, flutter, vagus nerve, phrenic nerve, sleep apnea, digoxin, helpful supplements - your relationship may get off on the wrong foot. What you do need is a very clear description of symptoms such as you have given here. Probably your NHS cardiologist is mortified that the well meant insertion of a icd (presumably to save your husband’s life) has had such a bad effect and isn’t in the best mood unfortunately.

I do hope the hospital gets back to you with some helpful plans, best wishes and do let us know how he gets on ❤️‍🩹

[Efka in reply to Buffafly]

Thank you very much and I know you are right, it is a delicate balance and I certainly don't want to burn any bridges or come off as arrogant. I've tried to frame it so that I am the "problem" as in I trust the consultant I just wish we could be more engaged in the informed consent bit and options as it feels such a strange situation.

Sadly the heart failure caused a clot in his left ventricle which in turned caused 2 strokes before it was diagnosed properly and Clopidogrel was swapped for Apixaban. So I am thankful he was already on it when the afib started hopefully reducing the risk of clots due to that.

I am careful with supplements and have run by the current protocol past a Functional Medicine practitioner, absolutely appreciate that if/when more rx medication is added we will have to re-evaluate again.

Agree the symptoms do sound like classic heart failure ones... maybe I can see if they can take a look, maybe at least check his ejection fraction again (last tests done were over 2 years ago).

Yes I stay optimistic, hopefully the hospital will come back with a good plan forward and I can take a step back.

I will let you know what happens. Hugs, Eva

[Karendeena in reply to Buffafly]

I was told the same about supplements, you need to be very careful

[CDreamer]

You have had some excellent advice from Buffafly and I agree that I would remove the Hawthorn supplement.

I would just add that you ask what is causing the Heart Failure as it may not be AF - in fact it could be the HF causing the AF. It can sometimes be a chicken and egg situation.

I would also query the AFl because that usually comes with increased HR. Has the AFlutter been confirmed by ECG?

Your husband does have complications which may mean treatment choices are restricted but I hope you find some answers and a way forward.

Best wishes

[Efka in reply to CDreamer]

Yes thank you I will now check over all supplements as several has raised concerns. The protocol we used was aimed at general heart health and HF in particular so maybe not appropriate now with afib and flutter in the picture.

With the flutter the pacing team reading the ICD data said afib and flutter but I admit I have no further info. I will ask them for a bit more information with regards to what is happening when etc maybe that can also help us decipher the symptoms better. Very interesting flutter normally comes with increased heart rate...

The HF is an artifact from a heart attack (after a failed stent op, he just attracts bad luck bless him!) a couple of decades ago now. Part of the left ventricle heart muscle is dead so prone to clots in the there.

Thanks again, hopefully we'll hear back from the hospital this week with a "plan B" so fingers crossed. Best wishes, Eva

[opal11uk]

If you do not have a sympathetic and willing to listen professional then, if it was me, I would ask your doctor to refer you to another. It is frustrating when you cannot get answers, your husbands consultant should be open minded and willing to try combination of drugs until a suitable balance is achieved to enable your hubby to live the best life he can. Good luck x

[Efka in reply to opal11uk]

Thank you, and you are right, it's time to get a second opinion one way or another. Something has got to give and there must be some help available.

Eva x

[opal11uk in reply to Efka]

Absolutely.....take them on!!! I too am in heart failure now for a year or so, my meds have all been changed plus I take a diuretic due to breathlessness as a result of fluid overload and I am being treated by a specialist heart failure nurse (working through my cardiologist, same one that I have had for over 20 years) and this specialist nurse has been amazing, supportive and there at the end of a phone......thats the kind of support you want to try and get for your husband because this also supports you. I wish you both the best of luck, if I can help in any way let me know.

[Efka in reply to opal11uk]

I love it opal11uk !! You have great spirit, thank you. And I am so happy you have found good support and more importantly of course a mixture of treatments that is helping you.

I have a very curious mind and have always been proactive in my health so yes I just need to find a person who is happy to involve us in the process so we better understand the options and decisions and what is actually going on.

And thanks for your offer of help, as some of these drugs (and afib and flutters) are new to me depending on what happens I might for sure ask your help, hugs ,Eva

[opal11uk in reply to Efka]

You will be more than welcome, we must all help each other in these troubling times. My husband has CLL - Chronic Leukemia, he has had this now for about 8 years and is, on what they term as, watch and wait!!! I have looked into this and also joined a CLL group on this forum so am well armed lol. I am eternally grateful to my grandmother who formed my character as a child, yes she was Victoria lol and that says a lot so, always remain positive , stay strong and be heard! All the best x

[Efka in reply to opal11uk]

Aww you made me smile! That is brilliant and yes I too have family to thank for my character, we are fortunate.

Wonderful you can be there supporting your husband as well and being 'well armed' lol that's about right isn't it, we have to be!

Many moons ago I had the incredible honour of consulting with a true gentlemen and retired endocronologist, he was proper old school, and his motto was "Full steam ahead" - I always think of that. All the best to you and husband too x

[opal11uk in reply to Efka]

Yes, you can do this, so full steam ahead for us both!!!

[etheral]

Why did your husband have an ICD implanted? Was he in V-tach or Vfib? This could affect the choice of antiarrythmics. If he is in Heart Failure this has to be addressed. Maybe a+e would be appropriate.

[Efka in reply to etheral]

Hi, the ICD was "sold" as just a belt and braces, you are fit and not too old so fall within the target group and possibly at slightly higher risk of a cardiac arrest due to your HF diagnosis. It was never meant to do any pacing, but now due to the afib it's pacing quite a lot.

He has never had v-tach nor vfib prior to the ICD operation. And now still no tachycardia, he's has been in bradycardia for many many years without any symptoms before this.

And it is a good point thank you, the HF should probably be looked into now even if just to exclude it from being the cause of the current issues.

Hoping to hear back from the hospital with a "plan B" this week as the Amiodarone wasn't tolerated. As you and many have said correctly, maybe if we don't get anywhere now is the time for a second opinion and more help.

Many Thanks, Eva

[Tapanac]

ramble on that’s what we are all here for each other

First of all have you been on to the pacing clinic if you are worried about the pacemaker? Does your hubby have a monitor beside his bed? This should be at least 3 feet beside him and mine does random checks on the PM which goes to the hospital. Pacing clinic are very helpful and qualified and they pass on all the information to the relevant cardiologist

Also the usual setting for a PM is 60 bpm. 40 sounds very low. Also he would probably have been better with a 3 lead, but that’s not for me to say.

The other thing is the supplements your husband is taking, is that wise or necessary without the medics knowing about them?

I would definitely get help and as he sounds in such discomfort and you are both so worried perhaps you could call an ambulance which is the quickest way to see a specialist via A&E

Alternatively if possible you could go privately to see an EP for the afib or cardiologist for the PM I think the cost is approx £250-£300

As hubby’s heart rate so low I’m surprised he is on bisoprolol although I appreciate that we are put on bisoprolol as a rate control especially after a PM

My husband has been put on digoxin and entresto (spelling) for his heart failure and doing very well touch wood he obviously on other heart meds as well

I feel for you both as I’m sure all of us have our worries and understand how frustrating and scary it can be

All the best and hope things are sorted out for you as worry on top of heart problems doesn’t help

Pat

[Efka in reply to Tapanac]

Pat thank you for being so understanding and kind, I really appreciate it. I admit it's felt like a long couple of months and I think even more so when it not yourself but watching your loved one struggle not knowing how to help.

I am so pleased your husband has found a good combination of medications to help and I know it's more often than not a case of trial and error to find what works best for the individual.

Many of you have raised concern on the supplements so I will definitely look at that! The current protocol was for general hearth health and lately to help the HF but it might not suit with afib and flutter now thrown in to the picture.

Yes he does have the bedside monitor so the hospital has all the data. We've seen the pacing team a few times now (and the Arrhythmia nurses, they are all lovely) but I think as the plan was "one failed DCCV, start Amiodarone and we'll try a second DCCV" nothing else has really been investigates or looked at. Including his HF which again many has raised as a should probably be checked out again...

He has been in bradycardia for many many year, never any issues or symptoms from it so they decided to set the bpm to 50 at the operation and later it was reduced to 40 bpm to see if they could reduce the amount of pacing done in case he was sensitive to the pacing itself. Sadly not much improvement even when reduced to 40 bpm but the amount of pacing did drop somewhat.

With regards to Bisoprolol I admit I am not sure, so he has been taking it for many years for blood pressure but as of last year he was down to a half dose of 0.65mg as we were trying to raise his pulse and his blood pressure was stable any way. After the operation they told us to go back up to 1.25mg which we have done but not sure if that was as a rate control (which would be odd as he never goes high?!) or as a treatment for his HF - I will have to ask as I am curious.

And you are right with getting to see someone to talk with, it is starting to feel like it is time for a second opinion not because I don't trust the hospital consultant more for me to be able to ask questions and understand what is going on. We did a few years back see a cardiologist privately so I might contact him as a starting place and if he is not the right person I am sure he has a recommendation for an EP.

Thank you again Pat for your time and understanding, all the best, Eva

[Tapanac in reply to Efka]

You’re welcome.

Regarding the heart failure both trevor snd I have that. I did a daft thing looking up Google as I’ve just come out of hospital with fluid on lungs and suspected UTI caused through dapagliflozin which is a common side effect. They stopped that, but as I say I looked up Google on other things like hilar and frightened myself silly. I thought heart failure was it was failing but nurse told me it’s just not working as well as when I was young.

Huh Neither is anything else ?!?!!!!!

I definitely would try to go privately if not only for peace of mind and how to go forward but also the bisoprolol question. I do know after my PM they upped my bisoprolol to 2.5 which kept making the PM alert so lowered it back to 1.25 but your hubby with his BP good and low pulse rate might need looking into

Again all the best as the worry doesn’t do you any good either. Do understand though.

lol pat

[Foreverfibber]

sorry to hear. Multaq would not be an option because of the heart failure, Has he been ablated?

[Efka in reply to Foreverfibber]

Ahh yes that’s what I thought that Multaq wasn’t compatible with heart failure, shame, thank you.

No ablation, it was mentioned in passing by the cardiologist as a “not sure you are suitable for it and I would have to refer you”. Think he wanted to try a second cardioversion first.

Will see what suggestions the hospital comes back with hopefully this week. I will ask about the possibility of ablation and if it might be a suitable treatment option.

Thank you!

[Foreverfibber in reply to Efka]

You need to find a good Electrophysiologist to review your husband's case and get his opinion. The longer he is in afib and flutter the worse his failure will get. The other option is an AV Nodal Ablation which would make your husband completely pacer dependent but it would remove the effect of the arrhythmia on your husband's ventricles which is causing the failure and allow the ventricles a chance to recover most of their function. There are things that can be done you just need to find the right people to do it.

[Efka in reply to Foreverfibber]

Thank you that is fantastic information you’ve shared! There is so much I don’t know, these are new areas for me. I’ll look up more information.

And ok certainly sounds like a good EP is the best way forward for more help.

I really appreciate your advice and insights. Thanks

[Westknoxgirl]

He needs to see the doctor who put in the ICD. Most of the time the heart rate is set at 60 and to not go any lower but can go higher to what ever they set it at. His heart may need pacing again if it is going too slow or too fast. As for the Apixaban , which is a blood thinner, it will help with blood clots and strokes. If he can not take Amiodarone he should be on some sort on beta blocker. I have a three lead ICD and it’s set for my heart rate to not go below 60. I have been on 200 mgs of Amiodarone for two months and just tapered down to 100 mgs. I can understand how he feels about taking it because it just makes you feel horrible. I will come off of it in one month hopefully. It stays in your body for at least six months so he maybe experiencing the same symptoms even if he’s not taking it. I know that feeling of not being able to breathe and it feels like you’re gulping for air. If he is in Afib he needs to get a cardioversion to put in back in sinus rhythm. And then maybe get an ablation, which sometimes doesn’t even work. I’ve had two ablations already and still went back into Afib. I had a three lead ICD implanted after I had a cardiac arrest in January. Since your in the UK I’m not sure if you have Entresto over there or not. It’s what I take for my heart failure. It’s supposed to be some sort of new heart drug that’s really helping people with heart failure. They have three dose levels and I take the medium dose 49/51 twice a day. I tried the higher dose but the side effects were horrible so I went back to the medium dose and can tolerate that better. I can sympathize with him on how he feels because I’ve been there and it’s a horrible place to go.

[Efka in reply to Westknoxgirl]

Oh gosh you have been through it all bless you! And I am so sorry to hear the ablations didn't do it's job for you. It sure all gets so complex when there are multiple things going on at once with trying to sort of the best medication bundle etc.

I hope you feel better once off Amiodarone but yes I have read about the very long half-life. Husband only took it for 4 days (both trials) before he had to give in and both times it took longer, 1 week, for the body to settle back down again.

They did one cardioversion which only lasted less than a day, that's why they wanted him to load with Amiodarone before trying a second one. Hoping to hear back from the hospital this week with their "plan B" whatever that might be. Ablation has only been mentioned in passing once but maybe now it is an higher up option!?!

I will check with the doctor who did the ICD operation, I'm not sure if he is "just" a surgeon or if he sees patients also...

Really great Entresto works for you, we can get in the UK for HF. It has not been suggested yet maybe as although diagnosed with HFrEF he's never had any issues or symptoms from it thankfully. He did try Dapagliflozin but again after a couple of goes it didn't sit well with him. Don't tell him but I think with age he is getting very sensitive to any medication which makes it all a bit tricky.

I truly hope your ICD will do a good job and that soon(ish) your medications will settle and you'll feel a bit better.

Here's to a good summer all round, thank you, Eva

[Tangalle]

hi Efka

So sorry to hear your husband is having such a rough time. It’s good that he has you by his side.

I read you have had a private consultation with Aseem Mulhotra. He is one of the best cardiologists so if you were happy with him, it would be worth contacting him again. It is correct that the normal route would be to find a good EP but in my experience they seem to follow one route where AF is concerned.

I hope you are able to get some support and resolution for your husband soon. In the meantime be sure to look after yourself as well.

[Efka in reply to Tangalle]

Hi and thank you so much. Yes I had been following Aseem online for many years around heart health and statins etc and a couple of years ago we decided to have a consultation with him. We found him fantastic, very good "bed side manners" and caring (even more so as in interview he can come across rather hard/professional).

He straight away said he was over medicated and also recommended nutritionist support, meditation and yoga and backed it all up with medical studies. And I highly respect him for openly adapting his stance with new data available. Now that to me is a good doctor!

And I do hear you, I suppose the old adage "if you are a hammer all you see is nails" comes from somewhere. I know I could write Aseem and ask and he would tell me if he thought we were better off seeing an EP as I have no doubt he has a good network around him.

Thank you for your care, we are trying to focus on the little things for pleasure so lots of tea and fires and movies (and maybe a few too many cakes but hey ho). Sometimes it's easier said than done but I know it is important.

Thank you again for writing, makes me feel more confident in my own thoughts, Eva

[Alphakiwi]

Efka, I am an 82 yo male now in persistant AFF for about 18months. You certsinly have had it rough as my wife also has.As i told my doc,Theres 2 in our household .I have all sorts of symptoms also, msny being the side effects of the meds. About 3 yrs ago i was put on amioderone and got worse over 11 days. I woke at 11pm after an early night with heavy palpitations, nausea, sweating ,thelot so got up and took my bp and it was unusually high for me. I told my wife if its still like this in 10 mins I will press 111. Ambulance came and after i was put on ecg i remembe saying, Im going. Apparently i flat lined for a couple mins as afterwards in the hospital the ambo officer came over to me and said Colin I bashed hell out of you to get you back.

So no I cant tolerate amioderone either.

Currently i take 120mg Diltiazem and 40 mg verapamil as PIP which i usually take at least once or twice during the night and sometimes during day. Definitely have excersise intolerance getting short breathed easily. I go over to my cycling club gym daily and excersise only slowly on stationary bike up to half hr in z2 which for me is 94 bpm. .

I had a pacemaker inplanted about 2 yrs ago and it is set at 60 bpm as i was waking during night with hr low for me in 40s and feeling nauseas. The idea had been due to med intolerances etc to ablate the AV node 5 wks after the inplant. However once the pm was in qol improved so ablate was not done.. qol is worsening lately so back and forth to doc a fair bit. As for digoxin i was on it and found it helped a lot but was taken off it for some reason. I had to throw the anticoagulants away due to all night nausea for many months after having been on that for 6 yrs . I think my body just couldnt take that anymore.

What next i dont know maybe with my med intolerance it will be the av node ablate ,!!!

[Efka in reply to Alphakiwi]

Colin my word now that was not a good Amiodarone experience! I am very please you made it through with the aid of the paramedics. I admire you for your spirit and can do attitude! And your thoughtfulness towards your wife, and me and other spouses. It is hard to watch the person you love struggle. And at times playing both good cop and bad cop, and of course the naughty nurse a times he he. We have to keep laughing.

I am sorry the quality of life improvements from your pacemaker hasn't continued. It's all complex isn't it. Thank you for sharing as well that you think you are becoming more intolerant of medications, that is interesting. I think you are right that at some point the body just go nope not anymore I've been on it for long enough...

I do hope after all your toing and froing to the doctor lately they will come up with a good option for you, as you say maybe AV node ablation, fingers crossed for a positive way forward.

Great to hear you were on and liked Digoxin, I will certainly keep that in mind if it is offered as an option. I wonder too how come they stopped it for you?

And I have to say I doff my cap to you for your daily exercise in the gym particularly despite of your breathing limitations. We both need to get back into some sort of movement, feels like we have mainly been sitting since February and I know that certainly won't help anything.

All my best to you, and thank you again, Eva