UPDATE for all you lovely people out there who were kind enough to send support at a tough time.
Firstly, just to let you know I’m recovering very well from the spine surgery, all healing nicely and to plan.
I spoke to the cardiologist this morning. After using Flec twice a day, plus as PiP on Saturday the AFIB still went on regardless but I also developed double vision - nothing going to the loo in the night and being unable to decide which of multiple doors frames to use to get back to the bedroom! That was a surreal experience I can tell you. 🤪
He said we’ve run out of options drug-wise, so he’s recommended a pace and ablate to be done in around 5-6 weeks. He said the only other option is to wait about nine months for an ablation procedure, but then I may find out it doesn’t work for me anyway. I gather in light of the fact we’ve run out of drug options to control the frequent AND prolonged AFib episodes, this needs doing ASAP.
I’m to start taking Amiodarone to try to tide me over till the procedure takes place.
NB this forum is awesome. 💓 The lovely Dawn has literally just been posting about her experience of having a pace n ablate, and if it wasn’t for reading her positive posts and chatting to her, I think I’d wouldn’t have known anything about pace n ablate, nor how to decide what’s the best treatment. When the cardiologist asked if I wanted some time to think about it, I was able tell him straight away no, let’s get on with it. xx
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previous post;
Ok, so please don’t all laugh at me. After posting on here a few months ago all the methods I thought would knock me out of AFib I’ve stayed quiet. Who was it said “Trying to find a ‘why’ is the path to madness”? Well you were right! 😟
Anyway, the AFib HASN’T gone away and is happening 2-3 times a week for 8-24(+) hours at a time (is this excessive?). The Flec 50mg twice daily and PIP Flec 100mg have little or no affect, or if they do, it’s quite a few hours later. Nor did the Digoxin, which the cardiologist has just written to say he has just requested my GP to change to Adizem (never hear of that one 🤔).
I can’t tolerate betablockers (dropped my normal BP like a stone and Metoprolol caused an ache in my eye sockets, which turned out to be a rare side effect(!), nor calcium channel blockers, cos they aggravated my (mild) COPD. None of them made the slightest difference either. 🤷♀️
I’m very concerned that I’ve noticed I’m becoming increasingly breathless with each recurring episode, and I fear for my poor heart being put through this constant battering. I checked my iWatch the other day for heart rate variability and the poor thing was flipping from40/60 - 160/200 BPM literally within seconds.
NB all my heart tests came back showing I have a REALLY good heart for a sixty year old ex smoker and I’m scared of what damage all these drugs will do to it.
Have to add I’ve had a tough 2-5 years stress wise which culminated 11 days ago with complex spinal surgery. I don’t the 6 hour anaesthetic and subsequent post-operative pain has helped either. 🫤
The cardiologist said I’d be a good candidate for an ablation, but the current wait time for that in the U.K. is about eighteen months. 😢 Having just got my back fixed (waited two years for that!), do I now have to combat this AFib for the next year or so?!? Sadly, the NHS is a mess!!
Questions are;
Are these episodes too long and too frequent? What do you guys call a bad senario?
What are your experiences of taking Adizem?
I look forward to hearing from you. Thank you!
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Dippy22
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Firstly nobody is going to laugh at you on this forum. The reason it is here is for us all to support each other whenever necessary.
Regarding the Flecainide PIP it always takes a few hours to work but for me it always does work.
The stress in your life will not help and it is important to find some down time when you can relax fully and try and empty your mind with slow deep breathing exercises or even meditation. There are a number of very good meditation videos on Youtube.
Although the waiting list for an ablation is 18 months for you I would get yourself on the waiting list. Ablation ultimately helped me enormously and although I had to have a number of them after 35 years of AF it is now 12 months since my last episode - unheard of in my life.
The shortness of breath is expected if your heart rate is fluctuating so much. You should talk to your EP and or GP about this to make sure they are fully aware.
Finally I have never heard of Adizem so I cannot answer your question regarding this particular medication. Looking at Dr Google it seems that Adizem is a drug to treat angina but you have not mentioned angina in your post.
“Adizem-XL capsules reduce the degree of saturation by presenting diltiazem in a retarded fashion therefore eliminating the high peak concentrations of the absorption phase. This allows the capsule to be administered once daily.” A rose by any other name….. 🤷♀️. We’ve already tried all this before. When I said Diltiazem was starting to give me a ‘wet cough’ at night, they promptly took me off it.
And yes, it’s mainly prescribed for angina and high blood pressure, neither of which I have! So frustrating as I think they’re drugging me simply because they’re unable to provide a quick ablation, or quick anything these days. 😟
Hi Pete. I have no angina. Heart is (was?) fine until all this kicked off big time in October last year. Cardiologist says in his letter that’s he’s referring me to the ablation specialist, but that’ll take weeks in the NHS. I think cardiology in particular is overwhelmed since COVID and all the heart related issues it’s caused. But that’s the first I knew about trying the Adizem. I’m speaking to him again tomorrow, so I’ll see what he has to say about it. That and the chronic dehydration, which I gather is also not beneficial to AFib either.
Thanks for all your support! I’ve been regularly doing extended sessions of yoga Nidra (deeply relaxing body scanning) and also listening to Jim Donovan vagus reset sound work. And buckets of deep breathing exercises. Whist it’s all lovely, it makes no significant difference to the AFib I’m afraid.
Interestingly I’ve just been for a post-surgery lymphatic drainage session - lots of lovely soft massage technique. Apparently long anaesthetic messes up all the body systems! What she did mention was that the lymphatic system is closely linked to, and helps to regulate, the relationship between the sympathetic and parasympathetic nervous systems - you know, the ones that control heart rate! 🤔
Just returned home and had a bite of lunch and having come out of 30-hour AFib episode sometime during last night, I’ve promptly gone back in again. 🫤 I wonder if the therapist has stirred something up
I’m PIP’ing Flec almost daily now, but to no avail. I really think something’s gotta give when I speak to the cardiologist tomorrow. 🫤
Certainly not going to laugh at you Dippy but I will have a chuckle at pottypete who is (or was😉) a friend of mine. I hope I’m right, but I think Adizem is also known as Diltiazem, a calcium channel blocker which provides the same benefits as a beta blocker but does it in a different way. I have taken it for around 9 years with no problems. If I’m wrong then the joke will be on me!!
Like many, I found Bisoprolol very difficult. At one point I was taking Bisoprolol, Diltiazem and Digoxin and things were very difficult to say the least. Ironically, before I was diagnosed with persistent AF, I was only aware of some mild breathlessness but as soon as I knew I had a problem, my ticker went ballistic which just shows how the mind can affect things. After a successful CV which later led to a Cryoablation, I was able to stop everything although the EP suggested I stayed on Diltiazem because my BP tended to rise when worried. I’m not aware of any side effects normally associated with Diltiazem and although I often think about stopping, but then I think if it ain’t broke, don’t mend it. Hope you get a date soon, if you are able to respond to a cancellation, it might be worth making the schedulers aware……
Sorry what you're going through and unfortunate the wait for ablation is so long, because it sounds like that's what you need. In the meantime, you could try increasing the daily dose of Flecainide or switching to a different anti-arrhythmic. As far as changing from your beta blocker to Adizem (cardizem), they basically do the same thing (rate control) but many find fewer side effects with Adizem although some prefer beta blockers. Then there's always lifestyle changes if needed and so motivated, but often not a magic bullet.
I’ve had six hours of complex spinal surgery in the past and I’m not surprised your heart is playing up - I hope you’re taking it easy.
I’ve taken Adizem, didn’t like it (gave me wind!) but Slozem and Zemtard fine, they all differ so worth trying a different one.
My experience is that they tell you the max waiting times and then you are pleasantly surprised when they call you. Sounds like you do need an ablation, I wouldn’t want to put up with your ‘timetable’ if that’s still the case after your op recovery. And if you can take up a cancellation even better.
Re the drugs - it’s the AF damaging your heart, not the drugs, they are supposed to protect against heart failure ❤️🩹
Thank you! I’ve just remembered why I didn’t tolerate Diltiazem - it exacerbated my ‘dormant’ COPD and the GP took me straight off it. I’ll seriously have to have a word with the cardiologist when he calls tomorrow.
I’m very surprised at that - I have asthma and my lungs are scarred from previous infections, which is why I don’t take bisoprolol. Diltiazem does affect heart rate and blood pressure but also has a mild antiarrhythmic effect depending a bit on the cause of your AF I think. I thought I didn’t have high blood pressure but after checking my BP regularly for a couple of weeks it turns out that in general I do and even have to supplement the Zemtard with a bp medication.
I have asthma and was recently tested for COPD which luckily I don’t have, but apparently I do have Long Covid. Diltiazem doesn’t affect my asthma, I’ve been taking it for two or three years now and like a few on here, I can’t tolerate beta blockers. Make a list of questions for your cardiologist tomorrow. Write them all down and have that list beside you when he calls.
On the subject of long COVID have you looked into zinc? Apparently they discovered that people with LC have low zinc levels and back at the height of the pandemic people who had low zinc fared much worse compared to people who had normal/high levels. If you’re not already it might be worth looking into taking a good quality supplement. A friend of mine who was suffering from longterm exhaustion post-COVID took it and within a week or so was markedly better. xx
Good idea! Thank you for reminding me of that. I’ve yet to be referred, approved and put on the list and Lord only knows how long that will take, but when I get to that stage I’ll certainly keep it in mind. x
Also if you can run to it,a private consultation with an Electrophysiologist( EP).means you get seen within days. Then they transfer you onto rheir NHS list.They are Cardiologists with specialist training in heart rythym problems.
Hi, the cardiologist I paid privately to see has written to say he’s referring me to the NHS ablation consultant. Hopefully that won’t take too long. x
I've got nothing to add to all the sound advice you've had other than to say it's your choice which hospital you go to, so it might be worth checking out the waiting times around the country. I switched from St George's to the Royal Brompton and got seen much sooner. My brother, who lives in North Devon , went to the Whittington in East London.All the best
Thank you, that’s certainly something to keep in mind. I’ve got a daughter in Bristol and a daughter in Oxford so my options for post-ablation recovery in different areas of the south of England are excellent. 😀
A fairly obvious question but what dosages of the various beta blockers have you been given that they cause a large fall in BP? These are generally very safe and widely used remedies, and the usual advice is to start low with dosage increased as necessary. BP surely is going to respond to the dose. As I am someone who has permanent AF generally very well controlled with Sotalol since 1995 I am perhaps biased. I take 80mg but in two 40 mg doses morning and evening as I found 80mg in one go affected by BP adversely too. But did your doctors try changing the dose when you tried these?
I was started on low dose Bisoprolol back in early 2022, but it dropped my (normal) BP, which I gather can be a common side effect for some people. I’d only taken a couple of tablets and I was on a dual carriage way with no emergency lane and felt I was going to pass out. How I got the car up the slip and off onto a quiet road I’ll never know. Frightening experience. Doc stopped it straight away.
Hi Dippy. I dont know where to start. I've had af 25 years + my episodes can last up to 24hrs+ and can happen every other day, which means I'm either in af or getting over it. I did get 5 days off recently, which was bliss. I take Apixaban and nothing else as I dont tolerate the meds I have tried. Beta blockers have the same effect on me as you plus give me nightmares. I requested a scan on my heart as I was concerned about any damage my poor pump had sustained, but all was fine (I'm 67 and ex smoker too) so was very pleased about that obviously. I had spinal surgery for stenosis during Covid but I didn't notice any negative effects on my heart. Now I can walk and do yoga I'm improving health wise generally 🤞. As for ablations, that is worth looking at. Get on the list is my thought as you can always change your mind. Its about quality of life at the end of the day. A lot of folk on here have had very good results with ablations. Look at the research and talk to others (Bob being #1 ) . It doesn't work for everyone but your not everyone. I know nothing of Adizem I'm afraid. There are so many lifestyle changes we can make to help our af. I read everything I can on the subject but I'm not an academic or one who retains a lot of information, but what I understand I put into practice as best I can for me. We are all so different af wise. It can feel like a minefield out there and i feel your confusion and concern. I wish you well. Keep asking questions. Jan
Hi Jan. thanks for your reply, I’m so glad we’re so similar and I’m not the only one.
My latest rabbit hole has been investigating the link between dehydration affecting electrolytes, Flecainide causing severe dehydration (which causes AFIB!), how the lymphatic system regulates electrolytes AND the sympathetic and parasympathetic nervous systems (vagus nerves!), etc.
I had a manual lymphatic drainage session with a brilliant therapist yesterday to try to rebalance the body fluids post-op and it instantly threw me into a prolonged, severe AFIB episode - which resulted in my taking even MORE Flec as PIP!! It was flapping around between AFIB around 150 and SNR 100+ all night.
I did a urine test strip this morning and despite drinking plenty water through the night the dehydration was off the scale. NB Edoxaban also causes dehydration. 😟 Combine all that with the fluid imbalances caused by long anaesthesia eleven days ago and it would seem I’ve got my self into a bit of an electrolyte defect issue. Seems I too don’t tolerate these meds well either. I’ll get a comprehensive electrolyte test done tomorrow and see what’s going on and how to fix it. This inability to retain water in my tissue cells needs sorting ASAP.
Hope your spine surgery went well. Mine’s healing extremely well. 😀
Good to hear your spine op went well and you are healing. Mine went very well and I'm starting pilates this Friday to aid my recovery and help my poor knees. I'm falling apart 😄. Anyway, I realise dehydration is critical with afibbers, so I wish you well with your new investigations. I seem to retain fluid then dump it just prior to an episode. I'm having a doppler test next week due to having blue toes on my left foot and a scan on my aorta same week. Thought I'd get a bit of an M.O.T . NHS doing the doppler, scan private. Having to mix up my health care just to get to the bottom of things 🙄. All good fun. Happy Mother's Day to any Mums on the site. 💐
Me too! I pee like mad when I’m in AFib - yet another dehydrator!
And I wasn’t happy with the scant information given over the phone by the arrhythmia nurse (who then got testy with me when I started asking too many questions), so I paid privately to see a cardiologist to get the full facts n figures. Not surprisingly he took one look at me (I’m petite!) and said to reduce the digoxin from three tablets to two and promptly booked me in for an urgent CT scan of my heart arteries, saying the NHS side should have done that as a matter of course BEFORE prescribing Flecainide. Shouldn’t have had to pay for that, but it turned out to be money well spent.
I can only praise the arrhythmia nurses at my local hospital , QA Portsmouth. I know people struggle with theirs but I have had the best of help from that department. Have a great day folks
Hi Dippy,When you say 18 months waiting time I wonder if this is with General Anaesthetic as it was 4 to 6 months with Sedation but 18 with GA for me.And sedation no problems.
That’s what the arrhythmia nurse told me and was confirmed by the cardiologist I saw privately. I’ll ask about that, and the options to travel elsewhere when speak to him/her tomorrow as I certainly can’t spend the next 12-18 months like this. Having just got the spine surgery done after nearly two years of waiting and planning to get active again, that would just be crushing. x
Your PAF seems very similar to mine - I gradually increased to episodes every couple of weeks that lasted 24-48 hours. Heart rate would fluctuate from 150-190bpm and made me very symptomatic - breathless, light headed, sweats, nauseous and of course the pounding.
I was initially put on Bisoprolol but it did little to control but like you dropped my HR like a stone with all the side effects. After a bit of a journey I found 120mgs Diltiazem (Adezem xl) and 200mgs Flecainide a day just about held me in rhythm. HR was slow but not quite as bad as beta blockers. I can’t say I felt brilliant on this but it was a relief not being in AF. Adizem is a calcium channel blocker so may not be good for you either.
I was also told it was an18 month wait for ablation (UK Devon). Whilst I was having frequent episodes the doctors plan was for me to present in the emergency department. Which I did - always very good. Straight in hooked up to heart monitors and given a combination of things until HR slowed, reverted and settled. On 3 occasions I was admitted and moved to AMU. By following this plan and being prepared to take cancellations I have had 2 ablations within the year. Unfortunately there were complications in the last one and I have been told I have non pulmonary triggers so it hasn’t worked for me. But I know for a lot of people ablation is successful.
I really hope you find something that works for you - AF is brutal and really impacts on your quality of life.
I’m in Plymouth! I’m speaking to the cardiologist tomorrow, but as I said to another on here, having just got the spine surgery done after nearly two years of waiting and planning to get active again, waiting around with uncontrolled AF would just be crushing. I so wanted to get out hiking again when I’ve fully recovered.
I’m currently investigating the links between dehydration (Flecainide and Edoxaban both cause this) and electrolyte imbalances. Both electrolyte imbalances and dehydration cause irregular heart beat. And the more irregular heartbeat I get, the more Flecainide I take. I’m trapped in a vicious cycle. 🫤
You really have been through it! Hope your appointment with the cardiologist is helpful tomorrow and there is a plan you are comfortable with and eases things for you.
I too have had regular daily episodes of rapidly conducive AF ( fast AF to you me, that was cardiogist words) at a rate of 180/200 & was exhausted & had several trips to A&E.
Beta blockers didn’t suit me as I was a zombie & unable to function. Adizem is slow releasing diltiazem , apparently it works together well with flecanide. I’m asthmatic too & there hasn’t been any issues infact it seems to have improved my asthma bizarrely! I have never had angina or high bp either but as said before diltiazem & flecanide combo are effective.
My episodes of fast AF have complete gone and my energy levels are so much better on this combination. Everyone is different , see how you go. Do let us know how you get on. All the very best 😊
Hi. Now you mention it, I was put on Diltiazem, but not with Flec at the same time. Maybe that combo would work. That must be the tactic they’re trying now. I’ll see what the Cardiologist says about it tomorrow.
I’m just aware that asthma and COPD aren’t quite the same. When I quit smoking the COPD symptoms (wet cough at night) completely went away. I hardly took any meds (ventolin) for it anyway, so although I know it’s a progressive lung disease, I’m in the VERY early stages. Cardiologist said he was “astonished how good my heart is for a 65-year-old, long-term (ex) smoker”. Nice to get some good news for once, eh? 😄
All the very best , I’d be interested to see what your cardiologist says. For me the diltiazem along didn’t reduce AF episodes but reduced the rate to about 130-160… the combo was good though . I wish you all the very best 🤞🏻😊
Definitely get on the list for an ablation and meanwhile stay anticoagulated. Sad that it’s an 18 month wait. Here in the US, on Medicare (with a supplement to cover drugs), I can get in for an ablation within 3 months at a cost of $195! But then we currently have a sane administration.
I hope you can get the dehydration conundrum sorted. I never used to drink enough water on the basis of what goes in has to come out the other end, usually at the most inconvenient time. With an oversensitive bladder it was a real pain. Then one evening I went into what was subsequently diagnosed as fast AFib. I couldn't breathe properly, so I phoned 111 and was eventually carted off to A&E under blue light. The penny dropped when the doctors mentioned dehydration and I managed to put two and two together. Lesson learned.
I’ve been drinking 2.5-3L a day and like you it just goes straight through. I’m pretty sure it’s the Flec causing this as on another conversation about on here a lady said she noticed her hands go dehydrated with half an hour of taking it. I wondered why my finger tips were wrinkled (“pruney fingers”) and it’s caused by dehydration.
hi, I was diagnosed with PAF 10 years ago and was prescribed Flecainide (max dose 150mg twice daily). Episodes were infrequent but I was also later prescribed Diltiazem (Adizem) which also helped BP as it’s basically a calcium blocker. All was well until recently when episodes became more frequent (every couple of months). Was told that this is an ageing thing and quite likely that as I approach my 80’s (still some time away!) it is likely that episodes became more frequent and possibly even permanent. Never had any problems with the medication and AF episodes are not ‘disruptive’ just annoying!
dippy I cannot believe they are letting you live like this without taking more action. You sound very much like me where nothing was working. Meanwhile, with a heart rate like that your heart is taking a beating. I am not a doctor I’m not even an a fib expert of my own I’m still learning that being said, I have been through the mill the last couple of years very much like you. The final medication was digoxin for me. I worked great for two weeks, and then it was doubled. Same thing again two weeks. I had a cardioversion fail in which they had done three shocks with no NSR at all. I am just going to share my past year. I had a very aggressive procedure/ablation. I only got worse and could not do more than shuffle down the hall. Crushing pain in my chest with the feeling of about to blackout and nausea. It did not matter what I was doing, even if sitting like a lump on the sofa. I had hit the bottom of depression and wondered why I was here.
Following the failed cardioversion my doctor mentioned pacemaker I was absolutely set against one sure my life would be changed forever. Then I thought about how bad could that be because I really didn’t have much of a life anymore. thanks to a fib. My EP had me try the digoxin for a month. Then we sat down and talked about peacemaker again. Meanwhile, with the support here on this site from others with pacemakers I had grown more open to the idea because what did I have to lose at this point? My heart rate FYI had been in the 150s continually. Only digoxin brought it down to around 100 but that would fluctuate. I was going to get a second opinion. I also had a list of questions for my EP. When we sat down, my doctor gave me the answers before I ever asked the questions. He wanted me over that day. I decided I did not need a second opinion. I felt safe with this man and his team.
Three weeks ago tomorrow I got my pacemaker. I posted today about how amazing I am feeling as of yesterday. I never thought I could feel this good again. My doctor told me I had the beginnings of heart failure because of my heart being so beat up with the high heart rate, before this particular pacemaker came out which was last year, the other type would not help me and I would’ve continued into heart failure. At that point the option is transplant, which probably wasn’t one for me at my age. I am 70. My doctor told me my heart, and I had had more than enough , that is why he suggested the pacemaker. I am blessed. I have a doctor that does not believe in repeating things that do not work such as ablations, cardioversions, and meds. He has pretty much said there are people who like them because they are money makers. He believes in quality of life, no matter what your age and he wants to get you to it in the shortest way. There is no cure for a fib everything they do pretty much is a temporary Band-Aid as far as I am concerned. I say that because I’ve had them all pretty much except for the newest technique of the maze. The problem is not the failure of the procedures. the problem is they never know what area is going to break down next and the electrical system and to try to map it can be hard. My doctor did not want to do another ablation because it was too hard to map and if you don’t get the right spot within a millimeter, it probably won’t work. If I have my EP on a pedestal It is well deserved. I have yet to meet anyone at the hospital at Cetera. That doesn’t agree. This man has a passion for helping us with a fib. No one knows how long they have in life. We don’t have an expiration date stamped on us. Why not have the best we can have as long as we can?
I know your health care is different a sample of that is the wait time you gave here. I am frustrated for all of you that have to wait knowing the damage that is being done if you have a high heart rate like I did. I can only speak from my experience, and we are all different. Some of the people here have been so blessed to have one procedure quiet it down, but then there are people like you and I who are finding no relief. I was so anti-pacemaker. I can never believe that. I would suggest someone speak to the doctor about it now. I don’t work for anyone. I’m not trying to sell it, but it is a little known fact of a new one that is out. Nanny Sue on here who is in the UK had it done before I did. I like to say we are both doing great. Definitely much better. Medtronic is the company. It is called Azure with HIS bundling. From what I understand it is the leads, especially that makes this special. Anyone with an interest should read it and at least ask if a pacemaker could be an option. Like everything else we are all different with those and only your EP will know for sure. I just want people to know there are new options every day out there And I feel that this one has saved me a lot of misery possibly my life. We don’t know what we don’t know and I do not claim to be an expert. I just want to share the good that has happened to me lately. Options are important so don’t give up. I also had the AV node ablated. FYI. It does not cure flutter. I have a typical flutter. That being said, it never bothered me that much and I have felt it a little bit the first week but not since then. Right now my heart rate is set at 80 and on 5 April, they are going to change it to 70 and see how I do. The goal is to get me down to 60. I can’t imagine how good that would feel because 80 is pretty awesome. One day at a time.
another novel by me lol I apologize ahead of time but I had so much shared with me on here that has gotten me to this point I want to help like all of you did me
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So disappointed 
Confused- ablate or not
Pace and Ablate?
