I am one of those who believe that you don't take meds, unless it is life threatening. So my question to myself is at what point does it become life threatening? I take Flecainide as a pill in the pocket to stop an attack, rather than daily to prevent one and up until now that has worked for 5 years. No longer. I have learned to live with AF but I would prefer not to.
The discussion on drugs at the Patients day was interesting, if somewhat alarming. My next drug would be Sotalol, a drug I have an instinctive negative reaction to. I was further alarmed that the doctor thought it was a drug that should be withdrawn. I asked if I could quote him on that, he said I could. I realise that there are a lot of people who will read this who may become alarmed, especially if they are taking this drug and it is working for them. It is not my intent to be an alarmist. I, like all of you guys, are just trying to navigate through some very choppy waters what is best for me.
I know now this is a nightmare condition for the medics as there are so many variables with symptoms, triggers and contrasting and opposing viewpoints. What frustrates me beyond belief that no-one seems to be looking at this holistically...... By that I mean joined up thinking not new age miracle cures.
If we know anxiety can exacerbate the condition what about putting together some tried and tested techniques from the psychological and the spiritual movements and offer handouts? There is a lot more out there than CBT and yoga! As helpful as they are.
If we know that vagal nerve plays a part then why not involve chiropractors, the experts on the nervous system. And what about the neurologists?
If we know that digestion is a suspect let's talk to the nutritionists and the gastro guys.
And most of all lets involve and listen to the patients because we are the real experts on AF, the rest are just experts on their particular interest.
Having worked for drug companies I know they are profit driven and they do some good work, but they are only going to produce drugs that are going to make money - that means they are only going produce drugs we need to take every day - simple economics as the cost to bring a new drug to market is around 2Bill and takes about 10 years. That is why we have no new antibiotics in the pipeline to fight the super bugs.
Whilst we continue to look only for answers from medics who specialise in their own area and don't see any value in any other way we are going to continue on the treadmill of taking one drug to counteract another's side effects. All drugs are dangerous, but then so is choosing life!
I am going for the ablation and my EP doc wants me on warfarin or one of the new anticoagulants which he thinks are superior, but will the GP prescribe as they are more expensive? After he wants me to take daily Flecainide for 3 months and then he is quite happy for me to stop everything, presuming everything works.
I have concluded that I am someone who is less anxious when I choose the treatments, and I accept that others trust their doctors advice, and are sometimes upset to discover that there is difference in knowledge and opinion.
My worldview is to expect and value difference. I am anti drug but not to the extent that I want to die rather than take them. I am not afraid of dying but right now I prefer to live! So very reluctantly I am going to take the drugs because at this time I can't see a better alternative.
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CDreamer
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Can't fault your argument. I have long thought it pointless to take drugs which are not controlling the condition. You are right in that the biggest problem is that AF has few commonalities amongst patients so any investigation into vagal studies would only affect a small percentage of patients as many sufferers do not have vagal related AF. Triggers are not the cause of AF merely facilitators as I have said countless times. There are people looking into the whole subject but I agree it is still a shame that more can't be done. At the moment the organisation is working flat out to try and get universally agreed levels of diagnosis and treatment across the UK let alone any further research.
Out of interest I have been seeing a Bowen practitioner for siatica with good results and he recently worked on "my vagal nerve" as I told him I had been having multiple ectopics. Result was I had the worst week for ages but then this technique often makes thing worse before they get better. Who knows?
I do think that we patients are the phalanx of research and should continue to make efforts to treat ourselves and share results whilst making sure that we do not give false hope to others.
I agree with you about the medication , currently I'm suffering from sotalol side effects and really trying to compare with its benefits
I agreed with my doctor today to try it as pill in the pocket , since it is not stopping completely my SVT episodes and my migraine dizziness and fatigue is really annoying
I'm planning for my second ablation soon and hope it will work to stop such medication
In regard warfarin unfortunately I can't stop it at all since I have mechanical valve , and I will continue to take it all my life
I believe that the patient know his body more than doctors , I always do where doctors fail , they can't think out of their box , that is why information is power and health also
Very interesting , like yourself I hate taking meds and will always try to avoid , however I was told following my ablation I need to be on warfarin for three months for the obvious reasons, which I can live with .
What I find really interesting is re holistic view . Since my ablation I have changed my diet and any attacks I was having have stopped as have the precursor if heartburn. When I originally saw a cardiologist I asked whether my diet could have any effect, I was told definately not, this happened with two cardiologist. It's obvious to me they either don't know it don't want yo know. They will try and fix the symptons and not the cause , as I said since changing my diet my life gas changed, I only wished I'd had the intolerance test done before my ablation!
I also hate taking tablets, but I also hate to play Russian roulette with my health, it as become quite apparent, that there’s not a one size fits all in the severity or indeed the symptoms of afib, also apparent is the wide-ranging difference in treatments to afib . This I feel is where the uncertainty a lot of afibbers have, regarding their concerns to whether or not they are on the right pathway to treatment. i can understand the overly cautious approach by the cardiologist and I for one wouldn’t want it any other way. But I do have a nagging fear in the back of my mind that with an over burden NHS there may be a tendency to leave some patients on drugs that they do not need to take. I hope that I am wrong, but I have now seen two cardiologists
One wants to keep me on flecainide 100mg a day, and the other cardiologist couldn’t understand with my case history why I was on flecainide at all and reduce it to 50 mg with intention of coming off it at the next visit, my concern is that I will be seeing the first cardiologist again on that visit, who I know will rush me through and will not be as concerned as the last one was,
I have trained in Reflexology and taken very strong interest in health and causes of ill health over the years. Had SVT for about 11 yrs, developed PAF 2019 and then T2 diabetes 2021! Yes I HATE pills. Yes I find the medical profession do not look for the causes, I suppose no time, not interested??
Drugs have massive lists of side effects night to frighten the life outta you, but we have to walk the middle line. I’m on 100 Flecainide morning 50mg evening, I take 1.25 Bisoprolol every other day. I intend to reduce the 100mg flecainide to 50mg eventually.
Just had blood tests to see where I am with Haemochromatosis as we have it in my family. This can cause T2D & Af!! 🤷🏼♀️
I don't take Tylenol because my headache is life-threatening; I take it to releive pain. Why have a headache when there is a med alleviate it? Currently taking sotolol after 3rd ablation and no afib episodes since. I gladly take the pill. I can't do anything with afib: heart rate 150+ and constant SOB. No thanks. Can't enjoy one thing in life like that. I am grateful for a med and procedure that seems to have taken care of the afib.
In the past 2 years, was hospitalized 18 times with afib. No meds would get me out of it, I always needed a cardioversion. Am now about 8 weeks afib free, thanks to a 3rd ablation and daily sotolol.
Pass me the sotolol, please. No ill-effects from it and I think it is helping to keep afib far away from me.
I finally got around to reading this article of yours!! Excellent and exactly how I see it! For me I was on Flecainide which was terrible for me and it too is a boxed warning med. But to make this clear to others, I am not saying it may not do you well! I believe for those who know or somewhat familiarize in the ins and outs of the pharmaceutical/medical world, the key is to do deep research and much of it seems to be hard to find (hidden maybe). It seems that if one is in basic good condition who eat well and exercise, is not prone to needless worry and anxiety than the success rate of going herbals etc is very beneficial! Prior to my ablation for only a matter of a couple of months and a few weeks after only took eliquis in the lowest form 2.5 a.m and p.m. I now continue to do naturals, continue exercise and eating right. As well spend time reading the bible that brings me much peace and joy! Blessings CDreamer!!
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