Is anyone on this site living with Afib without medication. If the answer is yes, what is your age and how are you coping?
Afib without medication : Is anyone on... - Atrial Fibrillati...
Afib without medication
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Slattery
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Hi, there will be many of us with AF and not on any therapy. I have permanent AF and am 54, the only way to detect I have AF is to check my pulse/heart beat. My resting heart rate is about 90 and I have tried beta blockers for rate control but they caused issues so I came off (with advice). As the health service sees AF as a stroke issue not a heart issue (I may be wrong... ) I will clock up a Chad's score when I'm 65 and then be on meds. But I think we permanent folk have it easy compared with those who get it intermittently, as their descriptions seem quite traumatic.
Best
Gary
I was diagnosed with paroxysmal AF 10 years ago. For the first 4 years I didn't take meds - I just put up with about 2-3 episodes per year. They were not terrible if I was in a position to find a comfortable spot and wait it out with a good book, or walk slowly. They lasted between 4-10 hours. But if they occurred during exertion (squash, cycling), they felt more catastrophic. At one point, I'd had enough of these occasionally episodes, and also reasoned that - if "AF begets AF" as they say, then the more episodes of AF I allow myself to have, the more likely AF will become the new normal for me, and eventually I might develop permanent AF. To prevent that cycle, I decided to start daily flecenaide, and it worked. It stopped my AF completely for 4 years - no episodes = happy. But then I had a death in the family and I went into persistent atrial flutter - the first time it lasted a week; the second time, I went to the hospital and had cardioversion. It turns out I'd developed flutter as well as AF. But since the flecenaide didn't seem to help with flutter (indeed, flecanaide can "organize AF into flutter") I opted for a flutter ablation - a low risk, high success procedure that should ensure that my heart is incapable of going into flutter. So now I'm back on flecenaide, and haven't had an episode for about a year. I also take a lot of fish oil, and high dose magnesium twice a day.
What dosage of flecanide do you take? Has it stayed the same amount?
50 mg twice a day -about the lowest dose prescribed, and yes, that dose. has never changed in 10 years -but my cardiologist did persuade me to combine it with low dose rate control, as the combination is supposed to be optimal for the heart.
I'm 61 and was diagnosed with PAF earlier this year. I've probably had it for about 18 months. My cardiologist agreed that I could manage without medication as I found the side effects hard to live with. At present, I only have the occasional episode lasting no more than a couple of minutes so I may have to reconsider when it progresses. I do take Apixaban, though, due to the usual risk factors.
Hi, I lived for many years with exercise induced AF (running and in the gym) without medication and I felt fine. An EP recommended that I didn't take an anticoagulant as I was a bleed risk and at low risk of a stroke. In July 2016 at the age of 69 I had a full stroke. I now take an anticoagulant - Pradaxa - use a saw and billhook to clear scrub in a nature reserve, my heart rate is still in excess of 180 bpm on a rowing machine or Spin bike and, I'm now blind on the right hand side after the stroke.
We are all different and just because AF doesn't pull me down doesn't mean that it won't affect everybody the same way. You can take from it that EPs don't know every thing and, that CHADVASC is a coarse tool as it uses a population average. Before the stroke I was a patient rep in a NICE group evaluating a forthcoming anticoagulation decision aid, and none of the clinicians could agree if the risk from not taking an anticoagulant remained the same each year, or increased incrementally or exponentially. The medical community has much to learn about AF. In the meantime I would say, take an anticoagulant (NOAC) if it''s offered, keep your blood pressure from going outside the norm and, be wary of EPs recommending Dronedarone or Amiodarone (a long story that I've bored this forum with before).
I have done both I have permanant AF I'm 62
At first diagnosis I was given digoxin dityzem warfarin
Followed by two unsuccessful cardioversions
Both put me back into sinus rhythm but lasted a few days
Saw an EP come off digoxin and warfarin
Then I had no drugs for 8 months
I felt better off drugs no leg swelling but I knew my heart rate was up just cutting the grass
I'm back on drugs diltyzem 200
And low dose digoxin
Lower limb swelling is back so I'm come a full circle it seems over 4 years or so
I believe over use of an asthma inhaler and the death of my mother pushed me into AF in the first place
My exercise tolerance has. Been no different on or off drugs
I'd say my well being was better off drugs if I'm honest
Was diagnosed with lone PAF last June after at least 5 years of episodes. Am 58 and have on average 10 episodes a year. After lifestyle changes and increasing exercise have reduced length of episode from 12 hrs to around 5 hrs. Always happen when lying down never when active so am presuming vagal, always self convert. Was prescribed flecainide pip by one cardiologist, have tried a few times and works well but makes me feel rough for the whole of the next day in comparison to just sleeping through it and letting it self convert so have decided to not take it for the time being. Not on anticoagulants at the moment. When I reach 65 or if I develop any comorbidities then I'll rethink hopefully by then more research will have been carried out into lone vagal afib it's cause and recommended treatment.
I am intolerant to medication,so do not have anything for AF. I am74 female. It started about 20 years ago. At first I manages on beta blockers,warfarin etc but over the years my body has regected everything I have tried. I don't cope very well as I am a carer for my husband who is 88 and gas dementia.My "episodes" usually happen between 2-4 in the morning. Last one was on Thursday. My husband isn't any help so I dial 111 and they send an ambulance. I am put monitored,sometimes a drip is put up. I then wait it out,hoping to revert to normal on my own,then sent home
Hope this helps
Hi there. Did you find you couldn't take warfarin either ?
Correct. Nose bleeds,bruising, finally taken to hospital with bad side effects
Hey ho such is life
Hi
I was disgnoised PAF 2 years ago
I dont take any medicines
I am 59 year old evan when i reach an older age god willing i will never take meds
I have about 6 episodes a year just lay down and wait for t to go normaly last 4 hours
I concerntrate on researching to find out whats causing these dreadful symptoms as till now health professionals still dont know
I am otherwise healthy with a healthy weight and healthy lifestyle
stopped all crap food stopped suger
Completly stopped all caffeine no alcohol no smoking
And instead of medicines i have researched about the body and its depletion of vital mineral and vitimains for the heart and body
This is the where i will go because the medications will destroy your body over time and extremly bad side affects with long term use
I take herbal medicine instead no side effects i do yogo and breathing
I currently am not doing any major excerise because i believe its the i flammation thats started this and causes
So just walking for now and weghts minor until next year god willing
So i treated my gut with anti inflammtory herbs to stop bloating as j belived the link to paf is in the gut and maybe not the heart in some people
🌺
Interesting. I have gut problems too with bloating and in permanent AF. Which anti -inflammatory herbs do you take?
Hi
Well since i not on warfarin i can take juiced ginger root fresh and turmeric root
Every day I take it with organic apples and lemon juiced fab drink
Then i take a herb powder mixure from planet organic
For gut inflammation called
Intestinew
yellow top can buy on line stops inflammation in gut and heals tissues damaged
Amazing stuff
chammolie is good for gut marshmallow teas but dried herbs only not tincture as these are alcohol and its toxic to body
too many herbs are anti inflammtory
I also look at all my foods to stop inflammation
There is a link betwen insulin release and inflammation as well. So i reduced carbs
Ectopics and afib have been soo much better since
I really do believe my initial problem started when i was soooo very stressed in work and studying and lookin g after family work in the nhs and burnt myself out 😳 Too tired to notice i was not well
I believe my body was acidic and depleted of nutrients
Massive inflammtion in my body due to stress
Then this triggers afib i was also getting loose stools for over a year from stress so all adds up
Can it be cured ? Once damage done ?
i am currently researching mitochondria / afib and the link between this amazing powerhouse enery given to the body that gets destroyed when body acidic and inflammation
I am very interested in the bio chemistry and cells as this is where all our disease starts
Sorry for going on just passionate about health and illness🌺
I love your take on this. I guarantee that if you spoke to the doctor about this he would give you a weird look and then end the appointment quickly!! Lol. I do feel you may be on to something and hope you find some relief!
Lol 😂😂😂😂
yes you are right
Sad thing is there are only taught to prescribe medications and not think out of the box if they do
Problem for them
I dont see them as "get the red carpet out they know best"
I know how think i use to work with them side by side in acute medicine until recently 🌺
How right you are about doctors, I have met some corkers over the years. If you don't fit into the box you have had it
Your post is so interesting,please post again as you progress with your studies. I am a couple of days out of A&E,at my age getting on my feet again after AF episode is getting longer. I am also a carer which doesn't help recovery. Going to hunt for intestinew,,thank you
Ps,trying a gluten free diet
Thank you i appreciate your feedback. 
I have tried gluten free seems to help ,,but realise again unless you make the bread from scratch or buy organic you are going to have put in unwanted chemicals and sugars.. so back to baking i guess .
I do bake gluten free cakes for one of my daughters,so used to baking. I buy Genius soft brown sandwich loaf and toast it. What an eye opener that was. No more stoggy , chewable bread with gluten
Ok it's expensive but worth it
Will watch out for further posts
Great 🌺
Thank you. Great information so I will try a more natural approach especially concerning the gut inflamation.
Well said and well done, I'm in the same boat, hope our decision is good.
Hi, PAF 2001, Given Sotalol originally, I felt that it was killing me ,so I stopped it( after discussion with GP of course) .About 5 years ago I was given Propefanone as Pill in pocket, I think I have used it 3 or 4 times in that time. I take Apixaban as I take anti hypertensives. I am 62. Best wishes Kath.
I have had paroxysmal afib for 9 years now. The episodes didn't last that long, the longest maybe 20 hrs. Started out just on a blood thinner-Pradaxa made me have stomach issues, xarelto made me have hematuria.
Had my first ablation 3 yrs later. Did not work. Had another ablation two years later. Did not work. Episodes got worse. Came very close to passing out more and more. Happening about every third day. Dr, put me on amiodarone. Did not like this med.Too many side effects, damage to the lungs. So had another ablation in 2014 at a different hospital and Dr.again it did not work. Was put on flecainide 100 mg twice daily andyhxnk God, haven't had afib since. Good luck to you, it is a terrible problem to live with for some
Where were your ablation done?
Two at Evanston Hospital, Illinois
One at Northwestern Memorial, Chicago
My mother is 91 yrs old and has had afib for over 25 yrs now. The only meds she is on is Metoprolol - 100 mgs 2x daily and Eliquis. She is in afib over 50% of the time now according to her pacemaker scans and ekg. She was on Tikosyn and digoxin for 5 yrs prior and her new EP/cardiologist took her off those 2 meds as he felt they weren't helping anymore. So now she's only on the Metoprolol and Eliquis. She is just being managed at this point. She has refused ablation and Amiodarone as another course of therapy. Her doctor is fine with her choices and we see him every 3 months at this point as she also has congestive heart failure.
Take a look a my posts over the last 3 years to see what I have done. I am still not on drugs after my first experience with them was less than helpful. My cardiologist wants me to take sotolol but has not made the necessary clinical analysis to see if I could be prone to side affects. Since the NHS no longer approves of this drug, this also makes me wary. So for now no drugs.
I have learned beyond a shadow of a doubt that my back is the biggest influence. I just returned from two weeks in Italy and had few episodes while there. And, if I did get one, when I laid down or put pressure on my back, it could be easily stopped by adjusting my position or by standing. Since I have been home, I cannot lay down without AF starting within two minutes. Being on the computer is a definite no no but so much is done today using computers, this is hard to avoid. When I was away, I was not on a computer at all. My chiropractor has helped and knows my C1, T1, T2, and T5 vertebrae need adjustment and attempts to get them to stay where they should be has not been totally successful. I have not had an adjustment in three weeks so this does not help. I will continue the chiropractor option since it does not involve drugs or surgery.
Getting anyone in the heart field to believe what I tell them isimpossible. I had to see a doctor in Italy for other reasons and I mentioned what causes my AF and I got another "deer in the headlights" facial expression. The only difference was that this doctor asked me to send him some more information about my experience. This is much more interest than any Canadian doctor has shown.
I had reason to check the side affects of the cipro antibiotic. It should not be prescribed to people who have heart arrhythmias. It also damages the autonomic nervous system, muscles and tendons. The FDA in 2016 issued a warning to only prescribe it for major infections. In many countries it is given for any infection. I think they now tend to limit the prescription to three days. The damage cipro does often is not evident for several months after taking it so the correlation can be missed. There is some possibility I have AF because I took high dose cipro for three weeks three months before I started having AF episodes. Of course this is only conjecture. And it should not have been prescribed since the justification turned out to be a mis-diagnosis.
I'm 73, female, and take no medication for afib -- that is, no beta blockers and no antiarrythmics. I do, however, take apixaban as an anticoagulant.
There's hundreds of thousands of people with undiagnosed AF and hence on no medication. I suspect it's only us with severe symptoms that need medication or ablations.
Hi Slattery, it would be great to get a reply from you to my query about what you're taking. I'd really appreciate some response to my message! Thank you.
I am 69 and I am not taking any medication at this time. My doctor wants me to start on anticoagulants when I reach 75. I do take vitamins and minerals for the heart. I have always questioned any medication a doctor recommends. Thank you for your reply.
why not take the anticoagulants now ? It recommended for over 65s ?
I have no other health problems. My doctor thinks anticoagulants are being over prescribed for people with Lone Afib at this time. More research is needed to fully understand Afib.
Apart from anti-coagulants I don't take any meds. I am 66 and cope. It can be incapacitating some times but on the whole I just get on with life.
As we are discussing lifestyle, when I had the stroke I was a gym bunny plus weekly yoga and Pilates classes. I was 70kg at 7.5% body fat and five feet ten. My total cholesterol was 3.5 with a high HDL component. I rarely ate red meat. My blood pressure was around 125/82 with a resting pulse of 45 to 48 and, my electrolytes were satisfactory. I had exercise induced AF but I would return to NSM within about four minutes after a 60 to 90 minute workout.
I believed as did two EPs that I was at low risk because of my lifestyle and metrics. However, none of that prevented the stroke. The Royal College of Physicians 2016 Stroke Guidelines state that the cause is unknown at the time in 25% of strokes. Just to add to the unlikely scenario, at the time of the stroke I had none of the FAST symptoms, the paramedics didn't take any notice of my sudden blindness on one side and didn't realise that I'd had a full stroke until we had been talking for an hour and my responses had got slower.
I should add that I was not overly keen to take an anticoagulant as 18 months earlier I had been close to death from Dronedarone and Amiodarone followed by a year of relapses. The Surface Ships section of MoD had a poster of a sinking ship with the line "The purpose of some people is to act as a warning to others". If it doesn't seem big headed, please take my experiences as a warning if you have AF, you're not taking suitable medication and you've been fortunate so far in not having a stroke.
Hi. I lived with Paroxysmal AF for 5 years age 54 to 59 and took no meds. The GP didn't seem interested. The episodes were 3 or 4 a year (any time of the day or night) and lasted exactly 2 hours. I could set my watch by it. I carried on as normal and wasn't unduly bothered as I was confident the episodes would stop. I exercised and ate sensibly.
Age 59 I needed a mastectomy and had an episode in the run up to the operation. Went to hospital had many tests and was given verapamil as a PIP plus daily aspirin. Continued till aged 64 with infrequent 2 hour episodes and no problems.
Then aged 64 I got bad gastritis (for which I blame the aspirin). I spent 6 months on omaprezole and a low acid diet and then the AF became persistent. (I suspect there may have been a connection between those things). I had it for four months till a cardioversion stopped it for a while and an ablation which partly worked for 6 months. Now in persistent AF for weeks at a time. I will have another ablation soon. I hate having AF but now take anti-coagulant, Flecainide and Bisoprolol which do help in a way. But I've cut back on work because when the AF kicks off I find it hard to concentrate or to cope.
I kick myself for not having made a fuss earlier. It seems that Paroxysmal AF is easier to ablate than persistent AF before the heart has got used to the wonky rhythm.
good luck with the second ablation . I am 56 and have had PAF for three years but still its pretty infrequent say once a week for two to three minutes but actually two hours yesterday and am still trying to decide whether to have an ablation or not so your post is useful JG
Difficult choice. It's a pity we can't see into the future and foresee how things will develop. Just because mine became persistent doesn't mean yours will, but people do say AF is very often progressive. I'd say once a week is pretty frequent though, even if the bouts are short. I forgot to say I am now using Magnesium oil on the skin which is supposed to be a good way of absorbing it, and sometimes deficiency is a trigger for AF. It hasn't stopped mine but maybe it might help long term. Very good luck to you.
I am 74,no medication. If I get a bad episode I go to A&E where I get monitored and sent home. Sometimes I go to bed and rest,but my husband has dementia so it's not easy..
An episode can be triggered by,stress,constipation,heat and food so I try and avoid these. I take golden linseed and mostly gluten free food where I can
I cannot tolerate medication,including anticoagulants
Not easy but there are others worse off
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