Just been diagnosed with AF following two episodes of fast AF with HR 280 over the last week and ended up in resus & CCU , very scary. Echo has uncovered structural issues, im only 55 and very healthy . Bisopralol has only helped stop my HR go crazy but not stoped AF.
Cardiology review today , being changed to diltiazem and after CT of heart to start flecanide if it’s scan is all ok. Anyone else on this combination? Also eating is causing runs of AF , any ideas??
No scary stories please as finding this all rather nerve racking & I just want you get back to normal & back to work. Any ideas when I’ll feel better to go back . Cardiologist says it’s up to how I feel!
Thank you lovely people 😊
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Sniggetts
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OK....I note your fears. I can only answer just one part. U say, eating causes runs of AF. No surprise there !
Maybe its not eating rather its food and its ingredients thats the problrm causing some agro to your Vagal Nerve. ( Google it).
If you have the time click on my name and you should be able to locste some of my posts on this issue. Do the same for CDreamer who has written much good stuff on food VN and associated issues.
I'm on daily Flecanide (100mg) and Diltiazem (120mg). I've been on this combination for last 2 years. Everyone is different, for some people it's coffee that sets them off, others alcohol, or certain foods.
In my case stress sets me off, either work or personal - although I'm sure there are some food related triggers, some foods I avoid as they give me bad bloating and wind, and that can set me off.
My biggest bit of advice is buy yourself a notebook, or use your phone. Document any potential trigger leading up to an AF episode, be it food, or food ingredients, caffeine, alcohol, stress, an argument, exercise etc. Remember things like caffeine, alcohol, stress hormones, nutrients can take half a day to be metabolised and be removed from your blood stream. If you suspect something is setting you off, try and eliminate for a few days and see if things settle down.
Above all, this might seem hard to do, but try and remain positive in your thoughts.
I’ve dropped all caffeine & potential stimulants so hoping this will help. Notebook is a great idea, I do need to try and chill out too as I can get myself into a bit of a state, especially as I’ve got to be clear for 24 hrs of bisopralol b4 starting other meds which is a worry. Can’t bear those awful hours of fast AF again.
It is scary but in most cases it gets better, much better over several years.
In the meantime learn all you can here and in particular work on better lifestyle choices - we have all gone far too far down the wrong roads. I believe the changes I have made done have made as big a contribution as the drug I take. Flecainide is a strong but relatively old tried and tested drug which was some comfort to me when it was increased from 100mgs to 200mgs (a medium dose) to stop my AF. AF presents in many different people in many different ways, so it is not surprising it can take some time to find the right drugs for you...or maybe you will be lucky first time!
Thank you , nice to hear it will get better in time . My job is a bit crazy so I need to put some thought into that. Need to keep the weight down & get exercising when I have a bit more confidence in my body . Really appreciate your reply.
'Weight down & exercising'..........assuming you are generally healthy, the good news is I found that losing weight is relatively simple compared to controlling AF.
I now weigh what I did at 18 with BMI around 23. Three main actions worked for me following westonaprice.org/#gsc.tab=0 full fat foods (yes full fat), brisk walking 1mile before every breakfast and supper, lastly prepare food from scratch with minimal processed supermarket stuff. Gone are the days of rollercoaster diets of losing and then putting it all back on!
Very interesting re full fat diet ! I have been a “yo-yo” dieter for many years , wardrobe filled with size 8-18 ! Very frustrating , have done soooo many faddy diets that work very quickly but then I fail once back into my terrible habits . Totally my fault , food is not my friend, always battled with it. It’s all or nothing for me 😕.
However, now with this AF I have to get myself sorted ! So I’ll have a look at the link .
Of course, personal diet choice is just that: PERSONAL, and debating over personal food choices is futile and often generates hard feelings, which I do not want to spark here. However, before anybody—especially those with heart issues—considers switching to a “full fat” diet loaded with dairy and other animal products, I vigorously recommend that you take a deep dive into widely and thoroughly researching the health consequences (good or bad) of eating that way versus the health consequences (good or bad) of eliminating animal products and their saturated fats and instead eating mostly a plant-based diet. Then, you’ll be armed with plenty of sound knowledge to choose your PERSONAL diet for yourself.
Yes, agree 100 percent. Diet is a private and personal matter. Your situation brings to mind James Herriot’s books of his life as a vet in Yorkshire in which he expressed amazement that he witnessed so many hearty and long-lived farmers there always eating plate-filling slabs of animal fat with no apparent negative consequences.
Yep, it was in fact a Yorkshire farm, not far from James Herriot country. We had a Jersey House cow so lots of cream, butter and cream cheese (curd) and Father always reminded us in his day own reared hams had as much fat as meat 🤪.
Interesting and very cool, indeed. Your description of such a life is charming and exotic to me, since I’m an American having grown up in Nevada and now living in California. Cheers!
Welcome to the forum. I relate to how scary it is at the beginning. You're given a diagnosis and your pills and you think 'now what?'. I am on Flecainide and Diltiazem, also Apixiban, which is an anticoagulant. I'll let others speak about the need for anticoagulants in many cases. Flecainide is an effective anti arrhythmic medication in the sodium blocker category. Because it can make the heart race its often partnered with either a beta blockers or calcium channel blocker for rate control. Diltiazem is a calcium channel blocker. It's also a vasodilator so helps keep you BP low. Only issues I've had with this combo is that my dose of Diltiazem was initially high, I then lost weight, and it made my BP plummet after long runs of AF. That's addressed now with a lower dose. Many people here are on both or one of these meds. You'll here some get on well, others don't. Getting your medication to work best for YOU is not an exact science and takes trial and error. Be informed- you're here - great start! And stay on your case - if the meds aren't improving things you don't have to put up with them.
Read Dr John Day's book The AFib Cure and check out the York Cardiologist YouTube channel to get started. Lifestyle changes can make a huge difference.
Thank you , it’s a great forum with lots of great ideas. Good to hear the combination of meds can work, but appreciate it’s also quite individual.
I ask about anticoagulants , but apparently being 55, female , a non smoker & no family cardiac history puts me at a low stroke risk so not needed just yet 😬!
Re eating. As Careuny says - vagal AF is a possibility. Also blood sugar responses - you get a high, then a low and off goes the heart. Our metabolic rate increases when we eat and that can cause spikes. It takes a while to work through these possibilities so be patient. For now try smaller portions and eat more often if needed, don't eat heavy and late, add more plants to your diet. Again, eating plans are very individual. There's a whole new science to it. You might enjoy finding out what The Dr's Kitchen podcast or books has to tell you about food and our health.
welcome and I completely feel your fear. And frustration I’m sure. I went into AF September 2021 and since then have had a cardio version and am now on 200 mg Flecainide and 160 mg Diltizem. I’m still at the early stages of trying to understand what triggers my sometimes significant breathlessness and fatigue. I suspect types of food. But overall I’m getting on with life ok. Have been back working since January this year. Luckily I work from home because I have a long complex commute on public transport and I wouldn’t be able to manage that. I’m enjoying life though because I realise how precious it is now much more than I did before. Good luck
I’m now on 180mg Diltiazem and 150mg Flecainide daily split across 3 doses and it works well for me. I take it between food, not with food. Getting to the right dose may take some time, I was previously on 120mg Diltiazem and 100mg Flecainide which didn’t control my AF and I had intermittent episodes which I put up with, but now wish I hadn’t as the new dose works well with no side effects. The dosage was decided by a cardiologist as a GP is unlikely to want to change a Flecainide dose. I know that chocolate, coffee and alcohol are triggers for me so strictly avoid those. Decaf coffee is fine though. Good luck in getting fixed!
Thank you, that’s quite reassuring, especially as I’ve never had to take any medicine before , it’s a bit alarming going straight into cardiac medication.
Not being controlled on rapid persistent H/R. I had been on Metroprolol and changed to Bisoprolol.
Controlled now on Diltiazem 120mg am and Bisoprolol at night. Saw a Cardiax Private Specialist. Diltiazem is a Calcium Channel Blocker whereas Bisoprolol is a Beta Blocker.
Both these are H/R control and help rhymn aso.
Throughout my pm H/R stays at 47 avge.
My Stroke and AF caused by undiagnosed thyroid cancer (removed with 2 x 1yrly clear scans).
Hello there! I'm sure these are scary times for you. I can't compare my situation exactly with you but to give you encouragement, Flecainide has been absolutely fantastic with me. Over a month I got my meds in balance, and despite being a larger man, I'm Afib free (most of past year) on 150mg Flecainide (3 x 50mg) and 1.25-2.50 Bisoprolol. Atoravastatin has halved my cholesterol in 9 months. I'd troubles since I was 15 and I'm now a fit 63. It can take soooo long to get the right combination of meds! About your triggers like eating, all of mine noo longer put me into Afib. Only problem came when I got Covid - eventually a higher dose calmed me and I was able to get back to 150mg. Sending you best wishes! 😊
I am 20 years older than you, but after being surprised 7 months ago when my AF was finally diagnosed, and accompanied by a range of blood tests, I was also told I was Vitamin D deficient (22 nmol/L). So I would suggest you pay close attention to your latest blood results, and be sure you have your Vitamin D level tested (needs to be requested in UK).
I'm now an advocate of Vitamin D supplementation, as 6 months after starting my loading dose and the subsequent daily maintenance dose, my level is now a healthy 107 nmol/L. And the important thing for me is that, as a consequence of this increase in my Vitamin D level, I feel my everyday pulse now has a more solid regular rhythm to it, if you can imagine what my subjective wording may mean. I feel better.
And there are any number of articles on the internet referencing the importance of Vitamin D in most health matters. Here is one I referred to in a recent Post of mine ...
Further, it is important to note that NICE UK recommendations re Vitamin D levels are woefully out of date compared with every other major country I've inquired about.
More adequate estimates of minimum levels needed are easily found on the internet or in the above article. I have no intention of going below my current level of 107 nmol/L, and this is nowhere near anything considered dangerous by medical experts.
Yes , absolutely, Thank you , i feel vit D is vital. A few years ago mine was way below normal so had loaded prescription dose for 3 months & maintained on an extra strength dose which just about keeps it ok… 😊
I take dilitiazem plus flecainide too, along with a blood pressure medication. When I was first diagnosed with af one of the doctors told me he had to take a dose as part of his medical trianing and couldn't exercise properly while on it as it slows you down. And in a recent conversation with a cardiologist I was told it's a good idea to take dilitiazem ot bisoprolol with flecainide as the last can give problems alone. At one tome I was on 100 mg of flecainide twice day without the dilitiazem and it mad me quite ill. Now I seem to be fairly stable on both meds. I am also taking a vit D supplement for osteoporiasis.
Finding the right meds and lifestyle for you can take a while but can be done. Good luck and don't worry .
Hi, not started flecanide yet as need heart scan first which should be soon. The cardiologist wants me to have it on a daily dose rather than ‘ pill in pocket’ as in AF & NSR 50/50 throughout the day .
Sorry , meant I’m in Af about 50% of the time & NSR 50% of the rest, some bad days in AF all day. The idea is to keep me out of AF all the time which would be via flecanide on a regular dose .
Yes, increasing the dose to the figures that I gave before have, touch wood, eliminated my episodes. I was first diagnosed with AF 3 years ago and started just on Diltiazem twice a day. That worked reasonably well, but I then started having more episodes, perhaps monthly. Increasing Diltiazem to three times a day had no effect. So then Flecainide was added to the Diltiazem, taking both twice a day. It didn’t really have much effect, so the cardiologist increased it to 3 of each per day, after which I’ve had no episodes now for 6 months. I am fortunate and have no side effects. My blood pressure is now quite low and very occasionally I feel slightly light headed but it passes quickly. I am very strict in avoiding alcohol, chocolate and caffeinated drinks as I know they could set it off and I don’t want to risk it. I take the tablets between food, not with food. I could be referred for an ablation but I am hoping that this medication regime will continue working successfully. Hope that helps.
The flec alone made me feel awful for a month when one doctor took me off dilitiazem. Together they worked, and I don't have much in the way of side effects now. I've had an ablation which ahs reduced my af burden almost to nothing for which I am very grateful. I was told on this site that an early ablation was a good idea and for me, it was.
Hi 😊 Well, I put off taking Flecainide for a couple of years. It worried me and seemed like a final med step that might not work... but I was completely wrong! My Afib got steadily worse (following very bad flu) and I was in ER a few times. Saw cardiologist. Started Flec a year ago. Didn't work very well as PIP but has worked 100% as a relatively low dose (100-150mg a day as timed 50mg doses) and I've had absolutely zero side effects. None. Maybe a slight headache at the very start but really, it's been fantastic. I caught Covid in April and that triggered Afib again but a higher dose of Flec controlled that again and now I'm reducing it back to 100mg a day. So, one delighted (and surprised!) customer here.
Bisoprolol has more side effects for sure. There's a feeling of drag down, so the least is the best. I take 1.25mg a day most days just to enhance the Flec (cardiologist suggestion) and that's just fine.
Only thing I watch out for is bradycardia. I mentioned my low resting pulse to the cardiologist but he was very relaxed about it.
Word of warning. Do not indulde in grapefruit or Grapefruit Juice whilst on these treatments. It contains enzymes which can affect the absorption/excretion rates of 60% of drugs prescribed by the NHS. The more drugs the higher the risk and also, Diltiazem specifically mentions this. I had an episode of AF 4 years ago due to drug induced arrhytmia. Look up on Drugs.co for info but dont let it scare you.
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