I greatly appreciate finding this forum. This is mostly just an introduction.
I am 55, in pretty good health, and wigged out by the diagnosis.
I had 2 episodes in 2019, I thought they were dehydration and too much Soda, so I worked to make sure that did not happen again.
I had 3 episodes in 2022, again I thought they were dehydration, and now I suspect a lot of stress. I live in Texas and one event occurred during a 108 degree heat wave, I spend a lot of time outside and can go through 3 shirts.
The final straw for me was in January of this year, I had an episode, I could not blame it on dehydration. It took me until my last event on 4/23 which I was able to get captured at the cardiologist on an EKG to get an AFIB diagnosis.
All resolved themselves, in 8-12 hours.
After talking to the electro cardiologist, which took another month, I am pretty depressed. I am now on Diltiazem, and trying to go cold turkey on the caffeine (which is awful)
My symptoms are super mild compared to a lot of what I read on this site, y'all have my sympathy. My episodes never got over 110 bpm, so I am a little confused by that.
I guess any help on what I should do...
1. Should I get ablation or PIP?
2. I would like to lose weight (about 10 lbs, and hopefully drop my BP, cut out caffeine) so if I do ablation, will I backslide into bad habits.
3. I keep being told/reading that there is a limit to the number of ablations, so if I can control with diet/Diltiazem/PIP, wouldn't that be better?
4. In that same direction, PFA ablation sounds the way to go, and that is not available yet in the States, should I wait for that?
5. I am experiencing some moderate anxiety, I read conflicting things on taking xanax etc.
6. Finally the dreaded life expectancy question, I see some folks saying they have had Afib for 30 years. I have seen/heard some ablations last 10 / 20 years, some fail to take at all. Any thoughts on this?
I really appreciate you reading my long message. Its tough to read the literature, or even this forum, my anxiety jumps dramatically.
Thanks Elliot
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AustinElliot
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I The most important thing is for you to take an antiocagulant as discussed with and prescribed by your Cardio. or Ep.Without this there is the possibilty you may be exposed to stroke.As strokes do not discriminate between TIAs and something that could be a whole lot more sinister it is pretty important you address this issue sooner rather than later.
Welcome to the forum and to the club no one wants to join!
Like you, I spent quite a bit of time trying to explain away the reasons why I was having episodes until one was eventually caught on the paramedics ecg machine and I was diagnosed with AF.
It all comes as a bit of a shock to realise there is something wrong with your heart, doesn’t it. I, for one, have been a lifelong anxious type and, as a consequence of that, like to control my environment as much as I can and have things in order. How ironic it was that I ended up with the most random and disorderly condition going😊 At first it used to mess with my head but after a while, you realise you’re not going to expire during an episode and so you learn to live with it and accept it. I’m currently in persistent AF and it’s ok, although at the beginning of this journey I never dreamed I would ever say that!
As for what to do next, below are my suggestions but I’m sure others will be along with theirs soon, too!
1. As 10gingercats has said, the most important thing is sorting out whether you need anticoagulants at this stage or not. Having AF, even if it is just random episodes, does increase the chance of having a stroke and that risk increases with age. Your EP should have gone through a risk scoring assessment with you called ChadsVasc to assess what your stroke risk is and whether you have other conditions, such as diabetes and high blood pressure that increase that risk and indicate that anticoagulation is needed. If no one has discussed this with you yet please make an appointment for that to be done asap.
2. Lifestyle changes. You’ve already said you want to lose some weight and are cutting out caffeine (I know that one can be a struggle but maybe it shows how addicted to it we are!) Doing those two things is a great start. Cutting down on sugar and processed foods by switching to a more natural whole foods diet, cutting out alcohol, staying well hydrated and also ensuring you get sufficient electrolytes, will all be beneficial to your overall health as well as the AF. However, changes are not just food and drink related. Reducing stress, finding ways to deal with anxiety ( a big one for me) and finding time for yourself each day are all good things. Exercise in moderation, too but not in excess.
3. Sleep apnoea. This one was a trigger for my episodes and something I had no idea I had. If you wake up during the night gasping for breath, or wake up in the morning feeling unrefreshed, it would be worth being checked for sleep apnoea.
4. Reading about the condition. Knowledge is power when it comes to AF, The AF association website has lots of useful information and I can also recommend a book by Dr John Day called the AFib Cure which contains a wealth of information on both lifestyle changes and medications/procedures for AF. Well worth a read, I think. Be careful what you read on the internet though and make sure the information is from a trusted source.
5. Medication. Having a PiP on hand would, in my view, be useful whilst you’re implementing your lifestyle changes.
As for life expectancy, when I recently saw my EP whilst in persistent AF I was concerned about what effect it would have on my life expectancy. He assured me that , so long as the rate is controlled and anticoagulants are taken when necessary, having AF doesn’t affect life expectancy. I was happy with that reassurance.
Anyway, apologies for the essay but hopefully you will find some of the above helpful.
I appreciate all you wrote. I do have a deviated septum, so I going to get that fixed as well as have the sleep study.
Hence the desire to reduce a little weight and get off caffeine, I read were some people drinking as much as I did developed a tolerance. I read a study that said the caffeine might be protective against AF. But I am just going to take it out of the equation, its not that much to me. I am managing it.
For stress, that's a tough one, my wife and I are going to start doing more things together, including yoga, and maybe Thai Chi.
The sugar and processed food will take more effort.
Dealing with this pesky condition can be a challenge but it sounds like you’re going in the right direction, Elliot. I believe that both yoga and tai chi have been shown to have a beneficial effect on AF, so they are excellent choices! Great that your wife is onboard and supportive too. Good luck to you going forward, TC
Hi Austin Elliot, and welcome. I'm 60 and have permanent AF. That is, I don't get attacks of it, it's there all the time, but it's asymptomatic. So no trauma.I'm my view AF is a stroke issue, not a heart issue. That is, your heart will keep on truckin' regardless, it's the side effect of clotting you should be cognizant of,once you are comfortable. Hence anti-coags are important. There's a scoring method your physician may use called Chads2vasc or Chads2vasc which helps them resolve this. You can Google this and have a go yourself.
Lastly, it's not a death sentence. Whatever you think about him (I'm British so no view) Joe Biden has AF and he manages to hold down a busy job.
There are loads of videos on YouTube,the AFAssociation has info and the heart charities too. All the best to you
Thanks for the reply. According to the EP and Cardiologist, I am not at risk for Stroke. My CTcalcium score was zero, my BMI is slightly high, as is my BP (hence the desire to lose a little weight) My Chads might be 1 if I had Hypertension, I am probably close.
Chads2vasc.. ditto. When I get to 65 I score a point then. My point is that in terms of grim outcomes IMHO it's stroke danger rather than the old ticker giving way.Good luck getting the pounds off
I wonder whether your episodes are caused by long-term cellular changes in the heart, leading to conduction irregularities, rather than caused by things such dehydration or caffeine. These have, I feel, both come to hold near mythical status in being the claimed cause of so many modern ills, but which never once affected even the last generation. There is no evidence that coffee causes or triggers AF, for example, except in a few who are, essentially, hypersensitive to caffeine. Binge drinking of alcohol, however, does seem to be a trigger, if not a cause, but I drink moderately and notice no effect on my heart.
The changes that lead to AF can be age related, genetic or inherited, or a result of chronic lifestyle aspects, including myocardial changes caused by obesity, lethargy, blood pressure, sleep apnoea, thyroid issues, and similar.
An early ablation is deemed the best option for long-term freedom from AF, but even then, a second and subsequent ablation is sometimes (often - I don't know?) needed. Of course, safe as an ablation is, all surgical procedures carry some level of risk.
Losing weight, increasing regular exercise (such as daily walking of 10k+ strides) will likely really help anyone's long-term circulatory and general health, but might well not stop AF episodes since the myocardial changes that allow this to happen might not be reversible. It often seems nigh on impossible to uncover just what is causing AF but a stress cardiac MRI scan seems to be a helpful diagnostic tool for a cardiologist.
Anxiety is standard with any cardiac issue and is very much part of my life when my heart is acting oddly. Relaxation techniques are generally held to be far safer than benzodiazepines unless you know for sure you're one of the 2/3 who are likely safe enough to take them and so won’t become dependent on them. Benzo drugs like Xanax do seem to help some people a great deal, but it seems can be a genuine curse, too, and one that is extremely hard to deal with. It’s surely better to find a non-drug way to relax if that is an option.
AF in and of itself does not very often affect life expectancy adversely, so far as I know (although, I suppose, it can be a part of other problems), except through causing embolic strokes, hence the need for anticoagulation. Many stats of life expectancy that show AF as deleterious seem to me to be measuring the effects of stroke, not AF.
I never thought I had a stressful life, I felt like I was managing it well.
My father was Type A and I was determined to not be that way. The last couple of years I could tell I was not managing stress as well. (since my father died in 2013, and my mom required so much help, she brought on a lot of my excess stress)
Hence the desire for xanax, I can manage with a 1/2 tab whenever the stress seems to much. I can't say I would not become dependent, but I have not yet in 10 years.
Thanks for the comments about the desire for early ablation, yes that's what the EP said and also what I have read.
If you don't feel stressed, then that's marvellous - and you would know it. Regarding Xanax, if you've not become dependent in ten weeks, let alone ten years, you are surely fine. Taken wisely, I think these drugs are a boon at times and wish doctors weren't so afraid of them. I take a drug called zolpidem for my insomnia that is often also said to cause dependancy and other side effects, well, like you, none of that has happened in over a decade of use.
I was diagnosed in Feb 2023, and it is a bit of a shock at first.
As earlier replies have said, anti-coagulants are very important to discuss with your doctor if you haven't already.
[3] As to the limit on the number of ablations. This limit is only important if you need more than one or two ablation procedures - jn other words, if they are unsuccessful. You may not need it. I have not seen any statistics showing how many people have just one or two that last, versus those who need to have many (but see below).
As to controlling Afib with diet and drugs. Diet and lifestyle changes (some exercise, relaxation) are important to do if you can (even if you have an ablation) since they help to ward off high blood pressure, cardio vascular problems and much more. Surprisingly, I now look forward to running (albeit slowly, when breathlessness allows)
As to whether it would be better to go the drug or ablation route, there are differing views. Whilst the guidelines in the UK (not sure about US) have not yet caught up, there are those in the medical profession who for some time have been advocating doing catheter ablation as early after diagnosis of Paroxysmal AF as possible in order to stop progression. Here is an example (a bit long, but a good overview): britishcardiovascularsociet...
[6]. On ablation success - even over the last decade techniques in ablation have improved, and like you say, PFA is also a new technique on the horizon, but not widely available yet.
From what I understand, one of the main issues with catheter ablation being unsuccessful is when it is left too long after diagnosis (see for example, pubmed.ncbi.nlm.nih.gov/237... ) As a result, the Afib can progress and produce electrical and structural changes in the heart (like fibrosis and loss of flexibility). This is often when ablation will no longer be effective.
On life expectancy, the anti-coagulants are reported to be the most effective drug treatment of any across the whole spectrum of medical conditions (not just Afib), due to their role in reducing strokes and their impact. And some of the lifestyle changes that we all make, once diagnosed with Afib, probably makes us (Afib community) better than a normal population.
Hope the support you get from the forum will help reduce your anxiety. Let us know how you get on.
I am still trying to work out the Ablation versus medicine thoughts. I have anecdotal response from some relatives that they have friends who have had ablations that lasted 20+ years. I would love to do that, but I worry that if I did than I would fall back on old bad habits. But I am going to consider it.
I drink diet soda, its relatively low in caffeine compared to coffee. I have gotten it town to the equivalent of 1 cup of coffee. But in all honesty I am not sure I need that, I am not sure I see a benefit/enjoyment from drinking that little. So its probably not a big deal for me to cut it out.
Its probably been a consistent force in keeping my BP higher, mine is about 125-135 / 70/80 without BP medicine. I think I will give the diet/cutting out caffeine and Dilitazem a chance and see where my BP lands after a few months of that.
Your BP is perfect without the Bisoprolol. My bisoprolol is for my BP a high systollic.
But last June 2022 the National DHB (now disbanded and called Whata Ora so that you can choose any one of these hospitals up and down the country), heart specialist diagnosed me with a soft systollic heart murmur!
I will see him again this year.
Apparently latest research says it is your systollic NIGHT BP to class you normal or hypo or hyper tensionable!
I know my heart rate at night is 47 average regardless of any meds.
Diltiazem 120mg does not last 24 hours for me.
What is your H/R at rest? Before Diltiazem and after starting? At about 12 months my H/R dropped down to 60s but prior it had dropped down to 80-90s.
So I do check it now and again.
Its certainly helped the walking distance and on elevation. Plus fatigue.
You will be in summer shorts whilst nighttime now I am snuggled up under a woollen duvet! But my nose is cold and these fingers. 3.12am here.
I am guessing my HR is averaging high 60s to low 70s. Its generally not lower than 58/59 and not higher than 75/77. Its jumping all over the place right now.
Had a bad last night with Chinese food (MSG) never had that before, not doing that again. I don't want to add it to my tracker, thought I was going to have an AF episode, but so far not.
I would trade the cold for hot, we are trying to do that. Last June, this time, it was 108F/42.2c. I can't tolerate it anymore, I sweat through one shirt in about an hour, I called them my 3 shirt days (hence the dehydration)
My Diltiazem is 180mg, I have only been on it for 3 days, says it takes 2 weeks to start affecting you.
180mg worked within 2 hours. Was 156 avg on Bisoprolol which was NOT bringing down my H/R. On D. 180g went down to 51! Doesn't work for days! WRONG!
With me Bisoprolol works on my BP not H/R or only a little.
Diltiazem Maya Brand not Accord works on my H/R.
In the private H/Specialist's Report he put from 180mg (1/2 full dose) I could go up to 360! No way!
Read about how Calcium Channel Blocker works it is interesting! Relaxes heart muscle etc.
If Colofac 140mg solves my now and again constipation (or kiwifruit on Harraways full grain organic Oats) by relaxing colon and bowel (too much cheese or in hospital) anything relaxing does the trick!!!!!
Chinese I have a Beef Chop Suey and veges (no rice) is excellent and lasts 2 meals over 2 days. Lots of juice too.
I have to keep any soy down with my thyroxin med Synthroid. Keeping TSH at TSH 1.0-2.0.
Keep away from spicy, high fat chinese meals. I cant eat Butter Chicken and I take KFC batter off that type of food.
In 2000 surgeon finally took out my disintegrated gall bladder. Complained from young girl.
We are in centigrade here and $ and cents.
I hate over 22 degrees. I was in Rome at 40c I melted.
Thyroid problems start with not being able to regulate sweating and exhaustion on exertion, I had to stop. Get a neck scan for check of carotid arteries and include thyroid. I had no swollen cyst etc but I had a shadow on it. 3 years of no cancer return and it is 4 years in September since my embolic stroke.
The triage group thought I would show a clot damage at the back of my head put I proved them wrong - a left frontal lobe event. MRI.
I don't wish to scar but the scan was the only evidence of thyroid cancer.
Perhaps hospitals will do a routine check of thyroids in an event of a stroke.
I have little disability from stroke left, like speech, swallowing, right hand fingers only. The main disability is AF but it is controlled as well as it can be to date.
Enjoying a cold morning and sun out, oops more rain, snowing desert road and south island great divide.
I think my camper will have short trips as in front of garage. The Yaris is housed in garage.
Walking up to top of my road and down to our big 4 square to get yellow rubbish pick up bags tomorrow which will include 2 caught mice!
In UK I rode a moped and later bought a Reliant Resaltor. The latter caught fire on the day I purchased my ticket back to NZ 1997. A spark jumped. Don't insure with Norwich. They wouldn't pay out.
Married a Brit in 1969 so I changed my entry to Right of Abode to UK.
The Social Welfare takes my retirement monies from 60. Here it became 65 in 2014. I got caught as they upped the age. I paid into it more than 5 pounds as I didn't know. Of course I was returning to look after my Mum.
Its King's birthday today. It sounds odd. I have the Queen's Coronation Locket.
Take care. If meds work grow into your routine.
I've just read Sam Neill's Book. Um well drawn out. He like me enjoys writing poetry. He was along my street neighbour in Kaipara. He waved out. Not well with a serious Lymphoma.
Life is for living. Jaz (my 9 yr mini schnauzer) to bed and me for a walk to the beach.
Great advice in above replies. Agree Anticoagulation first (my ChadVasc was 0 when first diagnosed, but EP put me on Apixiban straight away. Just yesterday I talked to a guy at my wife’s pickleball tournament, with mild AFib, whose GP said he didn’t need a blood thinner (“because you’re slim, only 56 yrs old, eat healthy, don’t drink and an athlete)” . A month later though only 3 AFib episodes in a year, he had a TIA.I also want to add my condolences re cutting out coffee … worst week of my life lol, though I also dropped the wine before dinner ritual too in same week. Was more a bemoaning for the relaxing rituals they had become, rather then the coffee and alcohol, I’ve realized. Feel better without them in fact. Good luck with all the decisions ahead, I have found them mind-boggling and anxiety-provoking as well. I read and listen to people, but I have found that the EP Team’s advice is irreplaceable!
Thank you Kootenay, I am going to take the advice about blood thinner seriously, I definitely don't want a stroke, and I am strongly considering the Ablation.
I am think I mostly over the Caffeine, I just have like 30 bottles, that now I don't know what to do with!
Hello Austin, I'm one of the guys that has been living with afib for going on 35 years now. I have been offered an ablation by my EP a few times but I keep refusing. As long as I can deal with 12-24 hour bouts of afib every three to five days I don't see a big rush to get one done. I will say this, I was put on a drug called Tikoysn, (Dofetilide) when it was a study drug and for about twenty year's it kept afib pretty much at bay, able to run 7 miles a day in the sand, spar and train others boxers actually live a pretty normal life, than all of a sudden the efficacy wore off and I was put on amiodarone which I can't do nearly as much as I could before. I just recommend trust and listen to your EP and although it may take a little time to find the right combination of meds that will work best in your situation just try and bear with it and let them know how concerned you are. Hope this helps to ease your outlook of this afib we have to deal with. Will be Praying for You! PS I am now 77 years old.
Your reply was greatly appreciated. I am very active, not a runner, mostly building, landscaping etc.
So I appreciate hearing about long term Afib. It is easing a lot of the worry.
Your comment about ablation was sort of anticipated. I am probably a lot like you, in wanting to see if I can cope with the drugs first. Yet I have heard a lot of people have good longterm results from the ablations. I might be leaning that way.
I believe for the majority AF is the result of a combination of poor lifestyle choices, which I know we all make. Avoiding stress is an excellent starting point.
On the diet front, switch to low fat cheese, milk and yoghurt (all dairy) though my “heart dietician” said it’s ok to have full fat milk with decaf coffee And try white chocolate as a treat!
I’m like you, I wrote my episodes off to different things like alcohol (I rarely drink but found after I’d been out and had 2 or 3 drinks the af started within a week afterwards) I was also told caffein could start it. I then went on decaf tea and soda. Thought I’d cracked it!
So tea total plus no caffein. Sorted!! NOT. Last af was the longest of all despite being on bisoporol and riveraxaban (for thinning blood)
I’m told af progressively gets worse over time. The last episode lasted 3 days only ever 24 hours before. The hospital upped my bisoporol upto 5mg a day (was on 2.5 before)
I’ve had an echocardiogram which showed my heart to be in perfect working order. The consultant said my episodes were more than likely down to being overweight
I have to make a decision if to have the ablation soon. I’ve been told to lose 10% of my body weight first for the ablation to have a good chance of working. Don’t know if it’s better to try the meds first or have the op.
Thanks for responding. Yeah the idea of the ablation if it leads to a long-term symptom free sounds wonderful, but it also sounds like its iffy and more of a try after the drugs have failed. Not sure, PFA sounds promising. I am gong to discuss that with my EP.
Hope you are successful with the weight loss. I have been strongly with being slightly overweight my whole life, so sometimes it was why bother. But I really want to sleep better as well. Elliot
I'm in the US. Was diagnosed with persistent AFIB last October. When I saw an EP January of this year, his goal was to convert me to Normal Sinus Rhythm ASAP and I had a cardioversion two days later. It was an easy procedure for me. You may want to investigate if that's an option for you. An ablation would have taken 8 weeks to schedule and the EP wanted to get me in Normal Sinus Rhythm the same week I saw him. Every EP is different as is every patient. When I go back into AFIB, after the anti-arrthymic drug I'm on no longer works, I will schedule an ablation - where I live they are doing PAF's as a trial and I'll see if I am a candidate for one, but a cardioversion was my first step.
Also I gave up caffeine and alcohol. Don't miss the stimulants (Decaf coffee tastes great) and I sleep much better. Was diagnosed with mild sleep apnea so have been using a CPAP machine and that helps too. Whatever lifestyle changes we can make...Nobody's perfect, I dropped 10 pounds, and though I gave up sugar and processed foods initially, I find now I have a hard time not giving in to sweets now and again and indulge in some salty foods as well. I'm aware and trying to do better though, but it's a process.
Thank you for taking the time to reply to my post.
Right now I am not in persistent AFIB. Yes there were telling me 6-8 weeks for an Ablation. I am still undecided, I might want to talk to a few more people before making a decision.
My experience.I survived 4 years of Paroxysmal AF having only 2 episodes in the last 18 months by only taking Diliatizem.Then the day after my first Astra Zenica I turned persistent and until 3 months ago I had 2 years of Purgatory.I managed to exercise & live a limited version of how I was prior.Again only taking Diliatizem.Failed cardioversion & so far successful ablation.But there is no way I would have considered an ablation when Paroxysmal.
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