I am finding out more about heart issues here on this forum than from my EP and cardiologist combined! Thank you all.
I am 69 and had one of the first open heart surgeries done in CA. ( for an ASD) There is still a small leak but mostly corrected.
I started developing multiple arrhythmias in my forties ( mix of a fib, flutter, tachycardia) and I finally was able to a cardiologist at 57.
Since starting with my cardiologist l have tried many drugs unsuccessfully, because of extreme side effects.
I had a successful ablation in 2013.
Last August I caught Covid and my arrhythmias came back. Flecanide tried. Fell asleep driving so switched to using Flecanide as a PIP. Nothing else.
I recently had another ablation on 1/3/23. EP said difficult surgery and time will tell if it was successful.
I lasted 10 days before giving up on the post ablation prescriptions of Metropolol and Eloquis because of side effects. I quit taking both meds and feel so very much better.
My questions: Do any of you live with arrhythmias without drugs? What are your methods of navigation? Is anyone else here so hypersensitive to drugs that they can’t/won’t endure the side effects?
Thank you,
Kit
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Petaca
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You are in charge. Make available the best medical professionals you can. I can't advise but for myself, with afib, I would never stop the anticoagulant.
I have been throughly frightened…. By the drugs themselves and the physician warnings on stopping them… no good answer.
You don’t have side effects from anticoagulants?
The side effects have not been liveable. Nausea, dizziness, backache, headache, migraine auras back to back, insomnia etc. I had 15 episodes of migraine aura in 10 days. Not that I want to stop but I can’t live with the side effects. I live alone in a very rural place and need to be able to drive.
I don’t feel there is much of a decision actually. I actually feel really good when I’m not taking them. I have ordered one of those new Fitbit trackers to monitor things a bit from home.
There is a procedure called atrial appendage occlusion which can be used in ACs are unsuitable. It's similar to an ablation and will eliminate the Stoke risk from AF events. YouTube it and find out if its something you could consider.
Hi, Kit! I am 70, 15 years with AF (always at night, during the day in NSR, so functioning perfectly well). I never bought the scaremongering about 5 times larger stroke risk. Not on any medication at all. Have also increased BP, but refuse medication for it. Let the God decide, when it is enough for me! For now, I feel very well, like I was 68, lol!
I did buy the scaremongering so my decision to stop anticoagulants was a difficult one, sort of. Ended up realizing it wasn’t a decision at all because I could not function while taking them.
Why do you refuse to take them? Do you get side effects?
And yes…let me live fully until I die.
Peace
Hello, Petaca!
Every word I have written is true - I did not take and do not intend to take medications, especially after the lies about C-19. Nobody from my family got the "magic water". I must admitt that my AF case is a mild one, my heart functions well in NSR and in AF, so I am not much worried about it. As for the 5 times larger stroke risk, how did they calculate it in the first place, when there is a huge number of people who have never been diagnosed - they have no symptoms and never realize to have AF. You know the story, it's all about money and profit. Look at the high BP! With simple reduction of the "limit value" for BP to 135/85 or whatever, suddenly there are millions of new drug consumers. How furtunate for drug producers!
The main problem with the study is that they only looked at people with persistent AF, not paroxysmal. We had had a long and interesting thread about this last year I think. They did this to limit their variables and ensure that their subjects were in fact in AF throughout the study. But that doesn't necessarily mean the results are applicable to a different sample population I.e. those of us in paroxysmal AF. One can see the dilemma though for the medical profession. Personally I've chosen not to take the risk. And fortunately ACs don't seem to cause me a problem. Bit of skin thinning I think but hey I'm coming up 67!
You are lucky if 135/ 85 is not considered as " high " blood pressure! 120/80 is the new "norm" in lots of places. It's like the cholesterol scam - keep dropping the numbers so as to get new customers for life. I'm lucky my doc doesn't buy it. Whenever I go for my prescription renewal it's usually a bit high for me 140/80 ( I find visits to the doctor stressfu) he always says "perfect". My last cholesterol tests (which I think were a mistake - they were not on the prescription but the lab has changed hands much to the doc's disgust and they did them anyway) were way over range and he said nothing about them. Said he was happy with everything except my TSH. Most docs would be writing the statin prescription as you came through the door.
I started my nurse training in 1965 and was taught that 120/80 was the perfect number for BP. It is the yard stick which I have also believed in. I am 78 this year but no longer have those `magic` numbers. 😉
Doctors were also taught that blood pressure rose naturally with age and were given a formula to work out normal blood pressure for each decade as we age. Only fit young people were expected to have a "perfect" blood pressure. The idea that everybody should be put on medication to achieve some one size fits all "perfect" number no matter what their age is ludicrous - especially given that no medicines are without side effects.
With so many professional and lay opinions it is difficult to know who to trust/seek advice from. Leaves my head in a whirl. I appreciate this group because I learn a lot which helps me with my personal choices. It is difficult to go against the current professional opinions. What a maze!
I believe that big pharma is greedy and will mislead many for the almighty $…. I find it disgusting.
I have had Covid vaccines and boosters and probably will not take anymore. However, my good friend with AF was not vaccinated, caught Covid and died.
Currently I am involved with seeking out more natural help, physically and mentally. So interesting.
So you're a couple of weeks post ablation. Any arrhythmia's or have you been in normal rhythm since the ablation? Did you try and figure out if it was the metoprolol or eliquis giving you the side effects? I don't do well on metoprolol but have no side effects from eliquis.
No noticeable arrhythmia since my second ablation but not all of mine are noticeable. I have ordered a 24 hr fitness tracker with cardio alerts to any abnormal rhythms. I am going to try to keep a close eye.
I went off Metropolol first. My EP wanted me to stay on the anticoagulant. Side effects lessened but continued. I live alone, 45 minutes from groceries. I dropped from 115 to 110# in just 10 days. (Dizzy, nauseous, unable to think clearly, backache, auras, headaches etc) I couldn’t cook, shop nor drive. I called the consultant nurse and was told my side effects were not side effects of Eloquis. Felt totally discounted. So, feeling that I had no other choice, I stopped the Eloquis…. And… all my side effects disappeared within 48 hrs. Even those that the nurse discounted…ha.
Just looking for folks who have tried other avenues of healing with success. Doing research and finding out many conflicting options . It is mind boggling.
Don't know your risk factors and maybe ACs aren't even necessary, but if they do make sense, how about introducing another AC, such as Xarelto? Some people have better luck with one over another. As to "other avenues of healing", it's a mine field out there, so be careful of anything drug or supplement out of the ordinary. Of course, losing weight if needed, exercise, relaxation training and a good diet are time tested with no downside, but may not work for everyone. Anyway, sounds like your're doing ok after your ablation so maybe don't rock the boat too much. Not sure the monitor you're talking about, but an ep can get you something like a ZIO patch which is a continuous medical grade ekg monitor. For specific events, I highly recommend the Kardia 6L that will record a medical grade ekg at home you can then share with your doctor.
If you simply tell your doctor you're having "noticeable arrythmias" or your sports watch is alerting you to heart rate they might not take you very seriously. If they see an ekg, they will take it seriously.
I’m trying the newest Fitbit sports tracker. They have a new approved algorithm and are able to record to record ECGs. Single lead and printable. Not medical grade but good for recognizing abnormal heart rhythm.
I’ll look into the Kardia too.
Yes it’s a mine field in the field of possible treatment in the “natural, alternative” field. Makes me nervous. That’s why I am looking here for folks with experience in “natural”, “alternative” methods of dealing with AFib. I’m not opposed to blood thinners (except for the greed of the companies who produce them) per say, just unable to take them.
I’m a small woman, old distance competitive swimmer….was fit enough before the arrhythmia ….I eat well, vegan, no sugar. Trying to learn meditation (hard for me to sit still)
I’ve had a Zio patch a couple of times for diagnosis. Will let dr know if I am alerted by the watch... I’ll try to get an ecg. Good tip. Thanks.
In the AC offerings, I’ve also tried Pradaxa and Xaralto with adverse reactions. Warfarin is not doable because of the needed blood monitoring (and being a Vegan it would be hard to give up the green stuff). I live an hour from the clinic.
Looked into the new Fitbit for myself. Could be wrong, but my understanding is that you won't be alerted real time to an arrhythmia, but only when you sync with your phone the next day. So you will get historical data, but I don't think you will get an ekg that will be taken seriously by a doctor.
What might work, assuming that your arrhythmia's have a high heart rate, would be to find a sports watch that will alert you real time when your Heart rate goes above a pre-set level, say 110. At that point, you pull out your Kardia 6L and take an ekg. At least that is my plan.
If you do go ahead with the Fitbit, please let us know how it works out and maybe share a sample ekg, as the literature is a bit vague.
There is a misconception about Warafin and eating green vegetables. My understanding is that you can eat as much green vegetables as you want, if that is your baseline. The problem occurs when someone who ordinarily eats meat and potatoes all of a sudden starts eating a lot of green vegetables. There are home kits to test your INR levels for Warafin, which should minimize clinic visits. Don't know your CHADS2Vasc score, but maybe you don't even need an AC, but if you do, maybe Warafin.
I was on warfarin since 2007. Recently tried Xarelto and Eliquis and didn't like the side effects of added fatigue, added insomnia, amplified pain. So, back on warfarin. I also started the ayurvedic herb Arjuna, 1/2 tsp daily, added to a smoothie. It's the primary herb in every ayurvedic heart health product. I reacted badly to metoprolol as well. Went back to atenolol. Watch Dr. Gupta's videos on youtube. He is a cardiologist in York, England. European levels of BP are normal up to 149/99, unlike ours. They used to say 100 plus your age. That would be 183 for me. I only take 50 mg of atenolol in divided doses of 25 twice a day plus 2.5 mg of amlodipine as needed.
I get terrible back ache with Eliquis. I have a crushed disc in my back but Eliquis makes the pain unbearable . Same with right shoulder. I found this out when I was taken off for 8 days before my first hip op . Even the pain in my hips reduced! I also get bloating and reflux so actually more likely to get an afib attack . So I only take a half dose. If I have an attack I immediately go up to the full dose and stay on it till the back pain becomes unbearable again - usually 4/5 days. Then taper off with 3/4 dose for a few days. When on the half dose I take a small dose of nattokinase and various other supplements that have antiaggregant properties - not for that but for other reasons. My doctor will not prescribe Warfarin and I have tried Pradaxa - even worse digestive problems than Eliquis. They tell you " these are not side effects" for drugs if the manufacturers have not listed them on the patient info sheet. The pharma companies fight tooth and nail to keep post marketing problems from getting on the sheets. Court cases against them often show that they knew about these side effects all along but concealed them.
great information James. Didn’t know that about either the Fitbit nor the Warfarin.
My sweet friend already ordered me the Fitbit Charge 5 as a gift! Will definitely let you know how it works. I’ll check if I can set the heart rate to alert when over a certain BPM. My HR in afib is over 200. Resting is in the 80s. I’ll need to experiment with settings.
Does the Kardia require a membership to get access to print the ecg?
I have a check back with the EP team in February. Will ask then about the options for ACs, and Warfarin.
Thank you!
My CHADS2Vasc score is a self diagnosed 2 -3? Dr. never mentioned it. I learned about them here.
Hi Kit. I've had asymptomatic AF for years, and a 5 lead ECG shows it some flutter. I haven't had an ablation, and I only take Pradaxa as an anticoagulant. I don't take rate control medication, as my heart rate can drop into the 20s when I'm sleeping, and dronedarone and amiodarone came close to finishing me off. We are all different in our experience of AF and the effect of medication. I mentioned in this forum about a study being carried out in the UK into the gene that metabolises the medication clopidogeral. That is given after a heart attack or stroke: I was prescribed it after a stroke. If you have a mutation of that gene, the medication is not as effective. Until I heard that, I hadn't considered why there are different responses to medication. My serious run-in with dronedarone and amiodarone occurs in about 6 in 100,000 people.
Really interesting about the gene study. It makes a lot of sense why we all react differently. It is hard when your body does not follow the norms. I was feeling discounted and crazy until I searched online and found a few others had intense reactions to conventional drugs as well.
I’m sorry you had such a time with drondarone et all. So glad you are doing ok now.
It has been discovered relatively recently that the rate at which we metabolise drugs varies genetically so there are slow metabolisers, fast metabolisers and those in the middle. The one size fits all prescribing practised at the moment suits those in the middle. Fast metabolisers will be underdosed and slow ones overdosed. Women metabolise some drugs differently and are often overdosed by the one size fits all prescribing. It is notable even on the limited sample of this forum that the women complain far more about the side effects of drugs than the men do.
We can vary in the speed that we metabolise carbohydrates. I remember a TV program by Xand Van Tullekan where people ate a small cracker. Those people who metabolise carbs quickly, have a different taste in their mouth. If gene profiling was cheaper, it would open the door to personalised medication, including for serious illnesses.
Some health organisations have links to Universities that run studies on health conditions; atrial fibrillation and stroke are two that come to mind. The Atrial Fibrillation Association recently posted a link to the AFFIRMO study: I've been a participant on that one. The more that patients participate, the quicker knowledge accumulates. If you get the chance, be a "mystery patient" for medical students to diagnose. It gives them face-to-face experience and, may reveal gaps in their knowledge. I've written in this forum, that a group of third year medical students had not heard of FAST. I fed that back, and the year two students in the following year knew what it was. We are discussing here how one size does not fit all, so let's engage with medical professionals to help them.
Apparently most drug studies are on men and, women can also be at a disadvantage in diagnostics. It wasn't discovered until relatively recently, that Troponin levels signifying heart damage are lower in women than in men. I remember being prescibed an antibiotic for a UTI. It didn't work. Another GP found that I had been prescribed the dose for a woman; the right dose sorted it.
Had my ablation in 2018 after week 6 the only medication I was on was rivaroxaban and I take magnesium turate for ectopic's, glad to report been in NSR since.
Hi, Answering your specific question about the Kardia 6L (recommended model), once you buy the device you will be able to record your own ECGs (from 30 secs to 5 mins), save them, and send them to whoever, at no extra cost. There are fees and subscriptions available for extra arrhythmia determinations, but this is not compulsory.
As to your questions about ACs, and the risks involved, this previous Post on the subject was mentioned above, and here's the link to that Post ...
Hi. I stopped taking the two different anti coags as the gave my stomach bleeds and anemia. Then I stopped the sotalol and use it as a pip so not regularly taking anything. I just ride out the AF episodes and like you will just accept my end when it comes. I bought into the doom about strokes but read up about these drugs and decided enough. They make me feel rotten so it tells me my body doesn't like being besieged by chemicals. I take turmeric, ginger and cinnamon every day as natural blood thinners. My dentist did a tooth extraction a month ago and said afterwards are you really not on blood thinners as I bleed well. ☺️ Had to have a stitch. Drugs of any kind feel wrong to me and my discernment which I trust more than anything. 🥰
We are of similar minds. I feel the drugs are making possible healing worse for me. How can I relax, keep stress at bay, think positively etc. when I feel so rotten and stressed and tired and depressed from the drugs that are supposed to help? It was too counterintuitive to continue.
I also take Tumeric, ginger, cinnamon daily with the addition of black pepper in coconut milk. (called Golden Milk on line)
Black pepper (usually listed on supplements as pepperine) is added to aid absorption in the gut. However, in some people it can cause an upset. I read once on the Internet (therefore may not be true) that it can cause a leaky gut.
By the way Petaca, I guessed that you would be at home in this forum, as the one you were in has much less traffic.
I totally agree. Why take things that ruin your quality of life! I intend to enjoy mine as much as I can even if it's shorter. I'm glad you mentioned coconut milk as I was just doing a shopping list and forgot that lol! I take a lot of different vitamins and minerals too and it really helps me maintain a good immune system. I'm also trying hawthorn capsules too for my AF. I make my own colloidal silver and an elderberry syrup for chesty / colds etc when needed. I also make rosehip jelly for a good dose of vitamin c. The best tool for maintaining as healthy a body as you can is not to live in fear. It will drag you down as our minds have a very great effect on the state of our bodies. Great to talk to you.☺️
Fellow NM here. Also just months shy of 70. Not as sensitive to side effects as you but found great confidence in the medics at Lovelace Heart Hospital in ABQ. Been through five ablations and five cardioversions with them for Afib and atypical flutter (left atrial flutter). Developed left branch bundle block with flecainide but metoprolol, amlodipine, and rivaroxaban are critical for maintaining a healthy heart for me. I’ve come to expect random arythmias without triggers despite living as clean a life as possible (no booze, heart-healthy foods, daily yoga/meditation, daily walks, low-stress farm chores). Fortunately, Lovelace Heart sorts me out within a month with the cardioversions when needed.
The big lesson learned from suffering with this beast for 10 years is that, as long as you’re anti-coagulated (on a ‘blood thinner’), it doesn’t kill you. So the key thing is to manage the anxiety for me. My smart primary care physician has me on gabapentin for that issue, which helps immensely, but there are lots of other anxiolytics available.
Keep working with the expert trained docs; don’t trust Dr Google; and above all breathe deeply and relax. It’s all about QOL not a life-and-death situation … provided you minimize stroke risk with the anticoagulant. Good luck.
by chance have you tried other anticoagulants? Like you I am very sensitive to medication‘s that are supposed to arrhythmias. Sadly I could not tolerate any of them. However, fortunately they do help a lot of people.
I take Xarelto and very small amounts of metoprolol only half of 25mg. at a time once or twice a day. Have not had any negative side effects from Xarelto and have taken it for a long time. As we know each of us are very different as to what we can tolerate. Hopefully your cardiologist is willing to try other meds for you.
Hi Kit, I am like you and can hardly tolerate any big pharma drugs. I have to have my meds created at a compounding pharmacy and those always work fine for me. However, I do not take meds for my heart post ablation. I actually decided to ablate because I could not take the meds prescribed. Between the ablation and avoidance of wheat and artificial sweeteners, I am pretty good. Only a minor blip rarely that I don’t worry too much about as it resolves quickly and is likely due to some food related sensitivity or high stress situation.
If side effects from meds give you problems, let doctor know. Most likely another med can be Rx'ed. It is not a good idea to just stop taking a med and you should let your doctor know. You certainly don't want to lie and say you're taking meds at next doctor visit, if you're not. It's just plain wrong. I've had bad side effects from a beta blocker, told doc, he rx'ed new med and all was fine. It really can be that simple.
I would never lie to my doctors about what I choose to do. I am always upfront about my beliefs and choices. They are here to advise and help me. I figure they are the professionals about the pharmaceuticals and I am a newbie to taking them. But when it comes down to it, whatever “it” may be ,😁, it is my body and I have to live in it and bear the consequences.
2 weeks ago I let my dr know if my choice to stop AC and have not yet heard back…
My problem lies with the fact that I have been prescribed and taken almost all of the AC’s and 3 different rhythm regulators with unacceptable results…
Your body your choices. Nobody can force you to take whatever medication you don't want to. Had you gotten a stroke due to afib, it would be only you to deal with the stroke. Nobody else, you did not know yet what a stroke means to your body. The whole world medical community agrees that Afibers has 5 times more risks than the normal population. It is not a conspiracy theory.
I took care of my dad for nine years after his stroke due to afib despite under warfarin. I was not fun for him, neither for me. I had to work and I had to pay a caretaker for 8 hours a day, 5 days a week while I was at work. It costed me 3,500$ a month, 10 years ago. I have no clues how much it would cost nowadays.
Do you have a support system in case you do have a stroke? And enough money in case you need to spend on your care?
You are in the States, the average monthly cost for a medium nursing home is around 5/6K a month. Be aware of it.
I’m sorry your Dad had such a hard time. You are a good person to take care of him like you did. He was lucky.
I pray I do not get a stroke. I came to this forum searching for much wanted information and am getting a lot. And yes, I am nervous about the possibility of getting a stroke and probably would take anticoagulants if I could.
I don’t think the studies on anticoagulants are conspiracy theories. I think ACs can help protect against stroke.
I have not been able to tolerate them and am in search of alternative possibilities. That is all.
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Questions?
To ablate or not to ablate
EP or cardiologist? 
Advice needed-what to ask EP
is it too soon for Flecanide? 
