I had a failed ablation in Feb 2021 which has significantly caused my AF to deteriorate. I went from one episode every couple of months to many episodes each week. I am convinced this is a direct result of the ablation. I've just been prescribed meds, which I've been reluctant to take up until now, in the desperate hope that I would get some relief, but again it has not helped, instead, the AF seems to start as soon as I fall asleep, wakes me up and keeps me awake all night. In the last 10 days since starting 1.25mg Bisoporol and 50mg Felcinaide, I've lost three full night's sleep and consequently had to take time off work for the first time due to AF. I'm a fit and active 55-year-old and this is a nightmare which has changed my life beyond recognition. The most worrying thing is that nobody seems able to help me in a medical sense, it's just a case of living with it which is pretty intolerable. I'm waiting on the longest list imaginable to be referred back to an EP. How do I cope with living like this for months ahead?
Living with the nightmare of AF - Atrial Fibrillati...
Living with the nightmare of AF
Hi tridye.
Sorry to hear about your predicament. Sounds like a nightmare. Hopefully it gets better for you.
Do you have the means to get a private consultation with an EP? Only the likelihood is you won’t have to wait long and will hopefully get answers a lot quicker. Atleast that’s how it worked in my case 👍
That's exactly what I'm planning to do, have an apointmen booked, but sadly even going privately the first appointment isn't until Feb!
An awful predicament for you and I do sympathise. I have to say that I felt i was worse after my second ablation but fortunately at that time I had plenty of contact with EP etc. I've since had 2 more and fingers crossed...
.However that doesn't help you now. I'm afraid that the only thing I can suggest is a private appt with your EP. It shouldn't have to be that way but that is how things are these days.
Good luck
J
Please research "Natural Alternatives to Afib" as the vitamin supplements are useful to some, especially Magnesium Taurate and Magnesium Glucinate.
Hiya tridye,
You say .... "the AF seems to start as soon as I fall asleep, wakes me up and keeps me awake all night " !
Could it be that food you are sensitive to/intolerant of is messing around with your vagal nerve and it is that which is the trigger. Have you noticed any connection with the start of an event and your gut/digestive system ?
Just sayin' thats all.
John
Thanks, I've been seeing a nutrionist and have pretty much stripped my diet to plant based, sugar free, gluten free, alochol free ....and still it persists. Life is pretty miserable.
Sorry to hear you are struggling. Can you afford to pay for a second opinion with another EP. Please dont accept being in this state without help. Try another EP as soon as possible. Living like this is not on. Good luck.
Hellish difficult tridye, especially after doing all the right things to get it right. Lots of good advice and if it’s possible, seeing an EP privately would be a good idea. I believe your first ablation was a Cryoablation? Whilst this should not have made your AF worse, it is well known that a second RF (I know you know what that is) ablation is often needed to touch up the areas which are sometimes missed by the expanding balloon used for the Cryoablation. I know, because this happened to me. You appear to be on a very low dose of Bisoprolol so it might be worth checking your pulse rate. If its below 100, it might be worth trying a Calcium Channel Blocker instead because their side effects “can” be less than Bisoprolol, especially if the dose is low. Because you are on a maintenance dose of Flecainide, it is important to take either a calcium channel blocker or beta blocker. Your Doctor may also suggest increasing your Flecainide to try and get your rhythm back on track. The important thing is not to lose heart (excuse the pun) because there is scope to try things but you must do it in conjunction with your Doctor.
Another thing occurs to me. When you say referred to an EP, have you been discharged from the hospital where you had the Cryoablation. I think this would be unusual assuming you have probably only had one review since February. If things were going wrong after 6 months, I would hope you were not discharged. Have you tried emailing your EP”s secretary to make him/her aware of your problems or maybe there is an Arrhythmia Nurse at the hospital who could help. We know things are difficult at the moment but given what you have told us, I would have thought you should be getting a quicker response to your problems. Maybe some very polite and measured table thumping is required
I have loudly thumped the table, it seems I'm on a waiting list for the EP but still not assigned to a clinic. I've had a follow-up with my cardiologist but he referred me back to the EP in August and I'm still waiting, despite both my GP and I chasing it up and despite two visits to A&E in the last two weeks with my notes being sent on, apparantly. I've just booked a private appointment but even that isn't until Feb. The system doesn't seem designed to support you once you've had the abalation, there's no support out there apart from forums like this and GP's are far to generalist to be able to help.
In response to your question about pulse rate, my resting pulse is in the mid to low 50's, so on Bisoprolol it drops to mid 40's and has on occasion dropped to 34. My cardiologist was aware of this previously which is why he suggested I avoid it prior to this. I just find the trying to figure things out for myself frustrating and worrying. I've lost faith in the NHS, both trips to A&E were awful, everyone is trying to give different advice and in the end you just can't trust the opinions of people who don't deal with this condition on a daily basis. I find it alarming that this seems to be such a common condition and yet dealing with it seems to by vague and variable and as accurate as hitting a needle with a hammer and hoping for the best.
You mentioned it started when you go to bed. Have you changed anything related to sleeping - pillow, mattress, heavier bed clothes, etc?
Yes, my second Ablation this year made my AF worse, not sure why. I was constantly told to wait for 3 months to get the full benefit. After passing out two days after the ablation and having pauses I managed to get a 7 day Holter tape that showed up my heart rate going down from its standard 46 and increase AF events where the heart rate went up to 140.It also showed over 200 pauses in the 7 day period, all of that got the attention of the consultant and I got a Pacemaker installed.. running at 60. So now the AF is the only outstanding item and I expect some kind of beta blockers to be issued to tackle that.
Hi tridye. Do the episodes begin when you are asleep or before. "Watching" the heart, I find, can bring on the arrhythmia.
How fast does your heart beat when in Afib. If it is in the 100 BPM range, perhaps you don't need the rate control every day?
I take 50mg Flecainide x 2 day as routine.
When I start to go into AFib I take 100mg Flecainide and 1.25mg Bisoprolol for good measure. When I first tried this a few days ago it stopped the episode within an hour.
Did you have a blood test for vitamin D3 (25-OH)? I was at the low end of the acceptable range, which may be too low to stave off AFib. Has your D3 dipped in the past year?
These are the supplements I'm on:
400mg Magnesium Taurate, 1000mg Taurine, Q10 200mg, vitamin D3 7,000 IU daily as a pill combined with 100mg vitamin K2 (MK7) - until I will bring it up to 60ng/mL, 100mg Nattokinase (2,000FU).
Are you on an anti-coagulant? If you are 55 and with a lone AFib, it scores just 1 (1.3% risk of stroke annually) and an AC is merely suggested. What is your CHADS2VASC score?
Finally, perhaps they can map the region of the heart where the errant signals emanate to determine how these were affected by your failed ablation.
Good luck. Saul
My CHADS2VASC score is 0 according to my cardiologist so no anticoagulants. I'm content with that. In AF I can go up to 150, but it also seems I have traces of flutter now too. Often it's not has high as that though. To be honest there is no pattern and it's different all the time. Sometimes it's just random beats that aren't even recording as AF but still feel just as bad. I appear to have a very excitabe heart for some reaon. I've had a full raft of blood tests recently and all's well. I also take similar supplements.
If you are zero CHADS2VASC then you must be under 65 and a male (according to CHADS2VASC scoring).Did you have your vitamin D3 (25-OH) blood test? It is a specific test that must be requested?
"vitamin D is an emerging risk factor of AF, and is implicated in the pathophysiology of atrial fibrillation. It has been established that this vitamin is extensively involved in the regulation of both the renin angiotensin aldosterone system and the immune system".
ncbi.nlm.nih.gov/pmc/articl....
I don't know enough about the medications you take but when do you take them? I find if I take adizem late in the day I cannot sleep.
Tridye, I am so terribly sorry to hear that things have gotten so much worse for you. We all know this misery. I now have 1-2 episodes per week, 125-150 mg Flecainide stops them (tho I get PVCs/PACs for 2 days after flec). So, in my quest to cut down the number of episodes, I recently learned about the Dolphin Stim device you clip on your ear to (painlessly) stimulate the vagus nerve. You sound like your episodes are vagally-mediated, so this might be of help to you. I have ordered this device and intend to try it. Will post my results here. There are also practitioners in various places who can do the treatments for you. The other thing now being recommended to me is amiodarone, in a VERY small dose, to avoid the side effects. I think I'll try the vagal-stimulation first. There's a couple of good studies showing its effectiveness. Blessings to you for improvement!
hi healing harpist do you have a link to this dolphin stim device or the cost etc, or links to studies done with afib , thanks
Keep us posted about the device please!
I read that Dolphin Stim must not be used if you have a pacemaker implanted.
Interesting. Yes I think some of mine is vagally stimulated. Interested to hear how it goes
Please keep us posted. Sounds very interesting. Ta.
Do you sleep on your left side? Last time I had an afib attack at HR 180, I was laying on my left side. Does your blood oxygen level go down at night? I used to wake up with low oxygen. I have been taping my mouth at night for the past 2 months and doing breath holding exercises from Patrick Mc Keown, that seems to be working for me. Although I am also fit in my fifties. we are all different. My heart got too much scare tissues to have an ablation I also walk at least half an hour after dinner with my mouth taped. Happy holidays and I hope you feel better soon
Check out this guys success without meds or ablation.
The following measures eliminated my atrial fibrillation (AF) and all ectopic beats, without surgery or medication:
Maintain serum vitamin D at approximately 160 nmol/L (approx 64 ng/mL).
Maintain calcium consumption at or below 400 mg/day.
Increased protein intake and consumption of certain fruits are also beneficial.
One relatively recent improvement has been the addition of dried plums to the variety of dark fruits (cranberries, blueberries, black grapes) and other fruit/veg which I consume. Plums (the dried fruit more strongly) being the only other fruit documented to have a metabolic acid/alkaline effect similar to cranberries [6,7], they consequently and predictably seem to have further increased my ”leeway” or “margin for error” in terms of how much calcium intake is permissible without triggering ectopics (and therefore any risk of afib).
Hi blulla1. I have been looking at the Carr diet but am concerned about the drop in calcium as I am post menopausal and dont want my bones to suffer. I have taken on board all it requires but need to do more research regarding the low calcium levels in a woman of 66.
Dear blulla,
I take it that the text is a quote by Steve Carr? (the footnotes references).
Have you, yourself, had a go at the Steve Carr method, and has it worked for you?
I am currently (last 6 weeks) been following his advice and am upping my D3 level from 31.1 ng/mL, six weeks ago, by taking 7,000 IU D3 a day (with vitamin K2 (MK7) to absorb the calcium that is freed. I am also on 400mg Magnesium and 2,000 FU Nattokinase, plus CO-Q10, and Taurine.
If you are on the "method", what level D3 did you have to reach, before you noticed improvements? How bad was your AFib before (frequency, duration, HR)?
Lots of questions, sorry, but it's important that we share valuable first-hand information with each other on the the AFA forum.
Many thanks. Saul
maybe upping your bisoprolol could help consult your GP first though
Hi Tridye, sorry to hear your story, it’s a miserable situation for sure. It sounds like you are similar to me, but so far my cv is working okay. Like Tomred, I was going to suggest taking another Bisoporol when this kicks off. As long as your resting hr is no lower than mid 40’s it may help. Some people are on 10mg a day, so it’s perfectly safe. When I had an Atrial Flutter attack, I took another and it went back to normal. When I told my cardiologist what I’d done he said I’d played it right. Worth a try?
I agree with Flapjack's suggestions. I think that if you are worse following the ablation, you have every right to insist on a clear explanation of what went wrong and to ask what their plan is for you. It's not acceptable for them to leave you high and dry as they have done. I would insist on an earlier appointment and that they take responsibility for the situation.
This does sound rough! Having has RF ablation in April this year I agree with Flapjack you should not have been discharged. So after Christmas my advice is to call the EPs secretary as suggested and explain how acute your situation is. I also take Flecainide twice a day - lowest dose - as my ablation wasn't successful. I'm not on Bisoprolol for rate control however. I take aslow release Calcium Channel blocker and that works well for me. Definitely ask for help and look into alternative medication. If you're not sleeping it'll only make things worse. Keep a track of your rates for two or three days if you can, write these down and report them. If you're getting AF at night it's possible that the Bisoprolol is making your HR slow down - as others say. Basically you need more information and you need to be armed with your information when you seek medical advice. Note each AF event, its severity and how long it lasts.
Hi Tridye So sorry to hear that. I am in NZ and concerned about no one trying to get any aenergy back I went to a private Heart Specialist who is keen to help folks..
He helped me by trying out CCB and Bisprolol at each timing of the day and by too much I have arrived at having 120mg Diltiazem morning and 2.5 Bisoprolol at night.
For me a good balance.
Also Pradaxa blood thinner well a prevention of forming clots also PRADAXA has 1/2 life so twice a day which can be reversed.
I was at my wits end and now I can work with gardening, walking and enjoying life.
I will reduce my weight too.
Let me know if you are NZ.
History when did it start this A.F? Take care JOY
We could be twins, except my AF was fairly frequent prior to the ablation. Now, I seem to be in it most of the time so having another cardioversion next month and a chat with a consultant about further ablation. It's a royal pain in the backside but contact your EPs secretary and become her best friend, if you're unable to go for a private consultation.
~Have you been monitored for sleep apnea?I went undiagnosed 20+ years - Dr did not take me seriously when I felt that I stopped breathing at times in the night.
Now on CPAP but the odd time this can trigger my PAF in the night - don't ask why but certainly know I am far better for having been diagnosed with mild s/a. & using CPAP.
Not sure if this suggestion of help - but worth a thought.
Good luck ~
Hi, we cant give you any advice re medicine here but given that you are having such a hard time I would advise you to go back to your doctor and ask if he would support your flec dose being increased - they normally advise 2 doses a day at a level that NEVER exceeds 300mg per day. If I was on the same does as you I would be in afib all the time but I am on 100mg 2Xper day and normally this keeps me in NSR - or ask about other drugs - dont give up if you get the right drug and the right dose you will get some relief until you maybe get another ablation.
Hi tridye. I have experienced a similar situation and I really feel for you. I have had 3 ablations and things got worse each time but I was told that could be because of my age I'm 66. I have seen an EP privately and it was agreed i will go for a 4th (yeah i know it sounds crazy but when your desperate...) . I was due a pace and ablate and i thought i was too young to go there just yet (EP agreed). Have you ever felt like your head is in a blender and you just cant make a reasonable thought stick? I'm not surprised you are so frustrated and lost. I'm also looking at the Carr diet but as I mentioned in another post I am 66 and post menopausal so have to watch my bone density. More research needed. Another rabbit hole to disappear down maybe, but you keep trying. I know this is probably not much help but I wish you every success in seeing an EP and getting a positive outcome.
Can have. Important to get the dose right or you might get a BP drop that's too much. That can make you feel faint. Diltiazem also makes you more photosensitive, so use plenty of sunblock or cover up in hot sunshine. Crucially for me - once we'd got my dose right - is that it tends to slightly loosen the oesophagal sphincter. If you get acid reflux already it might be a consideration. Since I use my voice professionally as a teacher and speaker I do notice that side effect but I manage it with sensible eating habits and Gavison Advance.
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