Paroxysmal Atrial Fibrillation without anti... - AF Association

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Paroxysmal Atrial Fibrillation without anticoagulant

Samazeuilh profile image

I’ve recently been diagnosed with PAF and was initially prescribed a beta-blocker (Solatol) and the anticoagulant Dabigatran. After taking only three tablets of the latter I had a subconjunctival haemorrhage (the white part of the eye becomes incredibly bloodshot - it looks horrible but cleared up in a couple of weeks and is not dangerous according to my GP). However, this indicated a risk of bleeding which the GP said might happen again. I elected not to take an anticoagulant because of the risk. The GP said this was reasonable as my Chads2Vasc score is 1 which means that I am in the equivocal area for a stroke. The risk, he estimated, was about 1.3% per annum. Other medical staff expresses the view that I should be on an anticoagulant however. I would welcome any comments on this, and have a few questions. First, what is the risk of bleeding badly from taking an anticoagulant per annum? Secondly, is a good diet, regular exercise likely to reduce the risk significantly? My GP didn’t give a direct answer when I asked him this and basically just said “we all know people who eat the perfect diet and do exercise, yet they still get strokes”.

46 Replies

Use of an anticoagulant seems to be 'standard procedure' and the 'other medical staff' may be simply following their usual process. Your GP, however, has gone through a logical thought process using the widely accepted CHADSVASc assessment. If you are anxious to reduce your stroke risk lower than 1.3% and if your GP agrees, then you could ask him if he could prescribe an alternative anticoagulant. However, all medicines come with warnings of side effects and potentially as-yet unknown risks. Some people prefer to minimise their intake of medicines for this reason.

For what it's worth, if it were me I would take your doctor's advice in this instance.

Samazeuilh profile image
Samazeuilh in reply to IanMK

Thanks for your reply. So far as I know, there isn’t a particular anticoagulant that stands out as being safer than the others from the point of view of bleeding. For the time being I’ll stick with the GPs advice- although he seemed relieved not to have to make the decision.

Mal7896 profile image
Mal7896 in reply to Samazeuilh

I take Eliquis and I have read it has the lowest risk of bleeding of all the anticoagulants

BobD profile image
BobDVolunteer

All drugs carry a balance of risk / benefit. One has to weigh up what one would rather see happen. With a CHADSVASC score of 1 you are marginal so maybe the bleeding risk is too great for you to accept. As things change then you may have to re adjust your ideas. I would be more concerned with sotalol which is not recommended for AF here in UK although some EPs do still prescribe it. It has both beta blocker and anti arrhythmic factors but can induce other arrhythmias in some people which is why it was dropped some years ago.

Regarding annual bleed risk this is so individual as to be unanswerable. The miss-used term "blood thinner" often makes people fear bleeding where as in fact one still needs an injury to suffer such. In fifteen years taking warfarin apart from maybe two nocturnal nose bleeds it has never happened to me and I work with metals. tools and machinery.

Samazeuilh profile image
Samazeuilh in reply to BobD

Thanks for your reply. I’m definitely going to look into this Sotalol. The company who makes it is going to ring me tomorrow and I’ll ask the GP to comment on its safety.

I've just asked a similar question, didn't see your post before asking.

Samazeuilh profile image
Samazeuilh in reply to Gwersey

It seems that the risk is difficult to quantify. My GP did say that if/once you reach Chads2vask 2 you should definitely take the anticoagulant.

IanMK profile image
IanMK in reply to Samazeuilh

That seems to be best practice based on the stroke risk with that score. NICE recommend that AF sufferers with a CHADSVASc score of 2 and above should take an anticoagulant.

I'd feel safer taking it I think, although my score is 1 and that's for being female. (with Afib)

I take Apixaban (Eliquis), which is a widely used anticoagulant. It doesn’t thin the blood.

What is your concern with regard to bleeding? If you have a serious accident while on an anticoagulant then the team treating you should be made aware so that they can take appropriate steps, but minor cuts and abrasions are no problem. I still cut myself shaving occasionally and I haven’t noticed any difference in stopping the bleeding since starting on Apixaban.

Samazeuilh profile image
Samazeuilh in reply to IanMK

Hi, the main concern is bleeding from the brain which the doctor at the hospital mentioned. I’ve had conflicting information form different doctors about the risk. One said it’s about the same as the stoke risk, another that it was much less. I’m not so worried about minor things like shaving etc..

IanMK profile image
IanMK in reply to Samazeuilh

A HASBLED assessment is usually used to factor bleeding risk. However, you may be influenced more by Jamila123’s comments below.

Personally, I tend to lean towards not taking a medicine if I have doubts but you must make your own decision.

Hi

Well this is going to be very controversial

I am A & E background nurse in a major stroke unit

When I was diagnosed afib

I refused to take any blood thinners that’s what health professionals call them on a daily basis

I have seen hundreds of patients come into resus

With brain bleed from these drugs

I have also seen hundreds of patients come in with strokes and no afib

Although I am orthodox trained common sense takes me to another pathway

It does not make sense to treat all afib patients with one hammer

Especially the ones with no heart disease

As the doctors still have no idea what caused it

Remember this when researching the drug companies make money from people being sick

It’s not in there interest for u to be well or the greater public

I have just thrown this in for Its up to u to use your own intellect

I hope u find the path that is right for u

Think out he box 🌸

in reply to Jamila123

The problem can be that if you find a path that's right for you and it's not what your doctors want you to do, it can be hard to find any peace of mind. You may feel damned if you do and equally damned if you don't, with no happy way forward.

Is it not time that heath professions (and indeed insurance companies and journalists) stopped referring to anticoagulants as 'blood thinners'?

Jamila123 profile image
Jamila123 in reply to

Understand about blood thining meds but it seem to hit a nerve when mentioned on here

We know how anti goags work

What they mean is what ever processe u want to call it

Thr higher the INR the more chance u have of a bleed that’s why it’s measured

But there is an antidote vit k that’s used

Unlike the new meds which is quite worrying

in reply to Jamila123

Well, it's not true! That's what annoys forum members. Anticoagulants do not thin the blood and it also seems a bit patronising for anticoagulation to be presented in a such simple and misleading way.

Vitamin K has its uses for those on Warfarin, but I have the impression it gets used more for the control of high INR than as an emergency measure in the event of bleeding.

I was deeply unhappy about anticoagulation and initially refused it. Five years on I am taking Rivaroxaban and am quite at ease. I have had no problems with it, despite the odd sharp encounter with various things.

Jamila123 profile image
Jamila123 in reply to

Hi

Well. Not trying to be rude I am just saying it as it is

Them meds can cause bleeding to the point

Of danger u cannot argue with this this is the truth

What ever there process u want to call it

It effects the blood and makes the blood thinner

I take bloods all day I can tell easy when some one is on the meds that effects the coag

I am not going to be backwards and forwards with this debate because it upsets people

It’ is what it is

People get effected by these statement s

I am NOT telling someone to stop

Just think for themselves and not be pushed into scared mongered Tactics by doctors

in reply to

They do not dilute your blood. Is this what you mean? The sentence anticoagulants do not thin the blood makes no sense. A thinner is that which inhibits the coagulation of a liquid into a solid. Anticoagulant is thinner. Not just in blood but in all materials. So if it doesn't thin your blood it also doesn't anticoagulate your blood because they are the same thing. People just keep parroting it doesn't thin the blood...what do they mean by this? Its like saying antialkaline additives are not acidifying the substance. It makes no sense. Anti alkaline is acid..anticogualnt is thinners...a coagulant is an antithinner.....I wonder where this all comes from its just repeated without rational thought behind it.

Samazeuilh profile image
Samazeuilh in reply to

True. My GP has said it’s a reasonable decision, but other doctors have indicated that they think the decision is unwarranted. None of them, however, were able to specify the probability of serious bleeding.

in reply to

They do thin the blood. Your thinking they don't dilute the blood maybe? Or that they don't make your blood into a model size six in a swimsuit? I think its time you all understood what a thinner is. It isn't a dilutant it isn't making your blood less fat it is inhibiting solids forming in a liquid. That is a thinner. It doesn't mean your blood can wear a swimsuit now and be a model...it doesn't mean its watered it down it means it has inhibited solids forming. Just like powdered lime stops solids forming in casien curds. It doesn't have to be a dilutant to be a thinner but dilutants can also be thinners. You use the word coagulate just fine when coagulation applies to variety of other scenarios and doesn't fully make explicate the process yet thinners is no good? I don't get this pet peeve people have and nobody has come up with a reasoning for it beyond " it doesn't thin your blood it doesn't thin your blood" what do people mean when they say this? Of course it thins your blood! That's the whole point! That's what anticoagulation is!!🤪

in reply to Jamila123

Do you happen to know if the statitistic on afib people getting strokes distinguished between clot ones and bleed ones I haven't found one that clearly or understandably says which kind of strokes they get..in general population is says way more clots but yet more desths from bleeds. I would rather have a clot with a warning and less risk of death than a bleed myself. I like that you said you can tell from the " thinned" blood who's on anticoagulants...I don't take any meds but I stated taking cayene pepper which thins the blood and shouldn't be tsken by people on blood thinners becuase it works so damn well...and I could.literally see the blood in my veins went from like a slug crawling down the wrists to not even a gap when I rubbed the wrist. It was amazing to see the blood become more fluid right there through the windows as it were. Amazing

I am with Jamila & parts of other replies i.e. postpone taking anti-coags as long as you can at least until CHADS score 2. The proviso is if you have other co-morbidities, don't take your diet, lifestyle including exercise seriously past 60 my decision would probably be to take them.

I am 65 this year and have Factor V Leiden (increased clotting risk) but have an active day and know that my stomach hasn't tolerated aspirin well in the past, my eyes bloodshot sometimes and I bang my head (no not at gigs any more!) quite a bit so on balance I don't take anti-coags. Hope something there helps.

I totally agree that people should be treated as individuals. The difficulty with choice is having valid research based info at your fingertips.

We all find the anecdotal experiences offered on here a great help and sometimes a comfort. I am a retired nurse specialist and it is easy to be swayed by what you happen to have seen or experienced but it is only a snapshot of the world.

The best assistant in decision making is a good medic you trust, as much research based info as you can bear to read (but knowing good studies from biased studies is very difficult) + your gut feeling of what is right for you.

IanMK profile image
IanMK in reply to Bagrat

Two points come to mind:

1. I don't believe that medicine is a 'perfect science'

2. Sometimes it's difficult to make sense of studies because of the terminology used.

Jamila123 profile image
Jamila123 in reply to Bagrat

Hi

Yesnn ow where u are coming from

But u do need to know the research is often bias and not correct

People need to think

Bagrat profile image
Bagrat in reply to Jamila123

I think that is exactly what I was saying.(or trying to say!)

I must admit I thought long and hard about taking an anticoagulant, I looked at CHADS and HASBLED in great detail and with a CHADS score of 3 decided on balance the benefits of anticoagulation outweigh the risk, if I had a CHADS score of 1 with no comorbidities I would probably have declined the offer of anticoagulation.

I used HASBLED as a kind of quide to reducible hazards (thanks to a previous explanatory post by BobD) and eliminated some risk factors like alchohol/some medication/ lost weight to lower my blood pressure to make my decision on anticoagulation safer.

See Gwerseys post above...

[quote =Gwersey I'd feel safer taking it I think, although my score is 1 and that's for being female. (with Afib)]

There seems to be some confusion about calculating a CHADS score if you are under 65 with no comorbidities and female , as I understand it the one point for being female is only taken into account if you meet other criteria for age and comorbidities.

I have tried to explain with links in two posts in this thread....

healthunlocked.com/afassoci...

I don't wish to labour the issue but feel it is significant for those trying to decide about anticoagulation.

Samazeuilh profile image
Samazeuilh in reply to doodle68

Yes, CHADS one is “equivocal” but 2 or 3 elevate the risk substantially.

Nerja2012 profile image
Nerja2012 in reply to doodle68

Doodle Try calculating a chads score when your 76 with no comorbidities. Age and gender put me at 3. It doesnt seem right.

im on sotalol and Eliquis.....I still get some afibs/PAC's but no bad bleeding nor bruises on arms....my 2 buddies cannot understand why I don't have black and blue arms...

also...my score is 3...stinks...

I was warfarinised as soon as I was listed for first PVI ablation, and have been on/off throughout my AF journey. More recently it was stopped a couple of months post flutter ablation, then restarted with everything when the AF came back earlier this year.

It was stopped again at the back end of June because it was contraindicated with None Steroidals I wanted to be back on for my knee injury (naproxen/ibuprofen)

I was told unless he was ablating the left of the heart again I didn't need to be on apixaban etc

I refused an anticoagulant ... take aspirin 80 mg instead ... along with other blood thinning natural supplements. My cardio is okay with it. I have PAF ... had two episodes in two years.

Samazeuilh profile image
Samazeuilh in reply to Janith

As yet I have only had a couple of episodes involving *fast* beats (although I’ve had plenty of ectopic

beats and occasional periods of irregular beats, which usually last for 2-3 hours). What do you do by way of exercise, diet etc. to keep the PAF at bay?

Janith profile image
Janith in reply to Samazeuilh

1. Zero red meat

2. Lots of veggies

3. Zero bread, potatoes and starchy food. Maybe very occasionally

4. Cocktail occasionally before dinner

5. Early dining ... 5 pm at the latest

6. Exercise six days per week at gym

7. Take tons of supplements

8. No sweets

9. No coffee, only dandelion tea sweetened with maple syrup

10. Try to get .7-8 hours sleep nightly

11. Take a good probiotic

12. Check blood pressure regularly

13. See my cardio regularly ... every three months

14. Drink lots of water

15. Avoid spicy foods

16. Avoid foods containing sugar ... read the labels

I am very tall and thin ... no weight issues ever.

Samazeuilh profile image
Samazeuilh in reply to Janith

Thanks. Sounds pretty demanding!

3 years ago I had a score of 0 then P Afib caused a stroke and I lost the ability to read for about a day+. I actually had 5 spots on my brain. The ER said you had better get to your own doc immediately as the chances of a severe or fatal 2nd stroke are high.

Now I have a score of 2 and am on Warfarin for life.

I guess they play the odds. Anticoagulants are dangerous. For the Afib population group as a whole it is safer for the group to risk a stroke vs the side effects of everyone being on anticoagulants. Unless you are the lucky one like me.

If you are going to be pushed in to a higher score by age anise why wait? I would push for an anticoagulant because you often can't undo the effects of a stroke. I am a vegan so my INR wanders all over the place on Warfarin. I have a home INR tester, I buy extra test strips on eBay and test every 3 days so I stay in the relatively safe zone of 2.0-3.0.

Stroke -v- BleedI read on here from a cardiac nurse that the likelihood of having a stroke not taking anticoagulant is less than a bleed

Just saw your post and realised it is a year old but I found that in Europe the interpretation of the scoring is different and anticoagulants are only used if the score is 3 or more for women rather that 2 in England- I found the full dose of apixaban gave me bruising and the odd nose bleed and then some time later, agreed to take the half dose as I weigh little over the 60kg cut off and am 75 so going towards the 80 when the half dose is prescribed. It does seem to make me feel rather tired though and I'm still hoping to get back to more normal life after almost two years! Hope you've sorted out your problem by now. I'm not taking the anticoagulants at the moment as the pharmacy didn't have them when I ran out and if anything I feel a bit better. We have a bad record on strokes so the doctors seem to be over cautious!

Samazeuilh profile image
Samazeuilh in reply to

A year later I’m still not on an anticoagulant. I’ve been

prescribed Apixaban which I will probably take soon. My PAF has been about the same- an average of once a month. The European position is interesting on CHADSVASC (not sure if you are in Europe). If their position was incorrect , wouldn’t that mean that there were vastly more strokes for AF patients in Europe than in , say, the US. I presume that’s not the case or the Europeans would change their position on the risks.

Well done! An EP told me that unless an episode went on for more than 12 hours or so there wasn't really a risk. You are fortunate in that your episodes are very rare. Mine have started happening far more frequently - like twice a week ,which is why I thought I should take the stuff again even though with flecainide as PIP, they don't last much over two hours and often less. Do go for the lower dose if you weigh under 60kg. Not sure where I read about the European interpretation of the score but I am in England where I was told I had a 2.2 percent chance of having a stroke and replied that I thus had a 97.8 percent chance of not having one! Why not be positive? People do have strokes who don't have AF- I know a few people who've had strokes but none of them had AF!

Problem is that an EP told me that once per month is still too often. The heart remodels and the left atrium enlarges and the episodes become more frequent. Some people don’t progress from PAF to persistent or permanent AF but between 10-20% to do per annum. Being overweight and even moderate drinking are associated with this. However, it isn’t easy to predict. It’s really an impossible decision netween the risks of stroke and a haemorrhage.

There are reasons why you might bleed. Do you have a k1 deficiency ? Lack of k1 can caused bad bruising... If you had that and then given ACS on top. Do you eat a lot of cayene pepper which thins the blood for want of a better word... Or any other foods or supplements which thin the blood like nattokinase? Were your clotting factors normal? Did they do any tests? .... Lots of dietary deficiencies can cause lots of symptoms including heart abnormalities so excluding and eliminating those would be helpful. My issues resolved on resolving a magnesium deficiency that I pieces together ... Can't afford tests. But unless you know you have a deficiency you can't treat it and can make one worse if you treat for the wrong thing so ideally you want tests. Lots of risk factors reduce your risk. And sorting out any underlying things would be top of the list because they're unknown risk factors until you test for them. In general things like omegas stop smoking hydration adequate nutrients blood sugar levels good all those things have risk reductions and some have side benefits instead of side effects. It seems most people on here are into the drugs big time and down the rabbit hole of all that without ever mentioning diet lifestyle etc. So it doesn't seem to be a common idea here. A few others on here have that approach and I'm only beginning to make the changes for my health so others who have been at it years will know more. But you can look up the data. Reduced all kinds of risks from all kinds things. Handful of walnuts bowl of blueberries all have a small effect and overall a lot of small good effects can have a big impact that shouldn't be ignore. Just as a small risk increase from neglecting simple things.. That missed glass of water that slice of bread that depleted magnesium ..it all adds up. So yes one pill may have a 70% risk reduction... Taking that on top of smoking eating pizza whatever that's how some people roll... But many things increase your risk 100% like smoking which doubles your risk ..ie increases it by 100% so there are people here who smoke and take the meds.. 🤯 and that is what it is. Its all choice. But it wouldn't take very much of adding lifestyle and dietary things which reduce your risk by a small amount to accumulate. If they only reduce your risk by 5% you would only need 14 of those things to get a risk reduction of 70%..

Peony4575 profile image
Peony4575 in reply to

The Afib Cure book pays huge attention to lifestyle if you haven’t come across it really recommend

Samazeuilh profile image
Samazeuilh in reply to

“But it wouldn't take very much of adding lifestyle and dietary things which reduce your risk by a small amount to accumulate. If they only reduce your risk by 5% you would only need 14 of those things to get a risk reduction of 70%..”

I don’t think that is correct, otherwise if you did 20 things- each at a 5% reduction- your risk would be 0%. The point is that there are limits to how much risk can be reduced. For example, if cutting back on eating fatty foods reduces your risk of heart disease by 40% and stopping smoking reduces it by 40% -I made these figures up- that doesn’t mean the reduction if you do both things is necessarily 80% since lifestyle changes of this sort may only reduce the risk by so much. That doesn’t mean that it isn’t more beneficial to do both things rather than just one, but it does mean that it cannot be assumed that the benefits are additive.

in reply to Samazeuilh

Well then just eat chilli's they're a 60% reduction ....I don't see why or any reason why yoi don't think doing something that reduces your risk by 5% and then something which reduces it 5% would leave you with a ten percent reduction rate... What's the point of reduction rates if they don't mwan anything ? And it could be with some of these things that the reduction rate is not only added but cumullitve the way risk is... The knock on effects of one thing to another. I find it obtuse that you find the maths solod when its a medication with risky side effects that aren't taken into the equation but somehow the inherent meaning of numbers fails a and collapses when treated with a vegetable that might help. I mean thats what its down to. Nobody wants to do those lifestyle things so just dismiss the numbers they don't mean anything... But find a study to obsess about which medications ignore all the side effects numbers too and jus tcocus on one subset of factors because you're not really making a choice your just rationalising. That's very much how it seems anyway. Not you personally. But people in general. They want to know all about one suspect of their health but totally ignore and dismiss the whole picture..just like doctors.

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