Hi this is my first post and am I'm looking for some reassurance.
I had a successful ablation for SVT back in February but have just been diagnosed with PAF after a trip to A&E with heart rate 201. I am taking Bisoprolol 2.5mg but have not been given anticoagulant as my CHAD score is only 1 for being female and age 61. This is to be reviewed when I am 65. I don't want to take unnecessary medication but I am petrified of the stroke risk!
Hi Richlyn, I think you are quite right to be concerned, and I don't think that you should just accept that you will be routinely reassessed at 65! Things can change rapidly over time, so anything that develops with you over the next few years needs taking into consideration too, but, on the other hand, based on science and medical evidence, as things stand at the moment, it's clearly considered not to be a great risk for you.And as a little reassurance, I went for nearly five years undiagnosed with PAF and was therefore on no medication. I didn't have a stroke, even though my CHAD score meant I was put onto an anti-coagulant on the day I did finally become diagnosed. And there are quite a few people in that position, many who have 'silent' AF so never seek a diagnosis. I'm not saying this is the ideal, but that not everyone who has AF and no anti-coagulation will become a stroke victim.
However, I think you should talk over your concerns with your GP, explain your anxiety, and ask for the in-depth reasons why you are considered to be low-risk.
Thank you for your prompt and reassuring reply. It's most appreciated.
I agree.
I understand your concern but equally use of anticoagulants when not required can cause just as many problems. If your CHADS2VASC2 (the full score not just CHADS ) score really is only one for being female you should be safe but do check that again.
Don't forget for example that even if your blood pressure is controlled by drugs you still need to score for that as once given you can't remove a score.
Hello Richlyn, welcome to the forum. I understand your dilemma and it’s a difficult situation to be in. I’m also scored at 1 but at the age of 75, I’ve been taking Apixaban for almost 7 years. I believe you can asked to be prescribed an anticoagulant and with a score of 1, your GP should agree. Good luck…..
Thank you for your reply Flapjack, most helpful. I will have a chat with my GP. As we all know anxiety makes the problem worse!
Hi Rich
My CHAD score is zero. However I insisted on anticoaguliants. I'm in afib and don't want to chance it.
That's my take.
Paul
Thanks Paul for your response. It is most helpful hearing other people's views and opinions.
By the way - I see it's your first post Richlyn. I forgot to add welcome to the forum. So I will.
Welcome to the forum - much info on here so please fire away with any further questions.
Cheers Paul
I wouldn't be concerned as doctors will usually act early rather than late. As Callendergal says don't just put everything on hold though until 65; from now on it is a process of making sure your lifestyle conforms to the best you can achieve.....and enjoy today!!
Thank you for your reply Secondtry. Fortunately I don't drink alcohol and have never smoked. I know I need to lose a few pounds which I am working on. I just need to calm my anxiety and stop thinking 'stroke' 24/7 as we all know anxiety does not help the situation!
It takes a while to overcome the anxiety. Aim for small gradual ways of improving, don't ignore spiritual. I think most here would agree the initial level of anxiety was not warranted but of course for newbies one has to learn that personally.
Reading replies from other people is most reassuring. It took a lot for me to post a question on this forum but everyone has been most helpful at a time when you feel so alone. I must admit, when I first got my diagnosis my first thought was 'Is this going to kill me?' but by reading posts on this Forum I realised that thankfully, this is not the case.
I will keep reading and learning thanks to people like you.
Sec wrote
"I think most here would agree the initial level of anxiety was not warranted but of course for newbies one has to learn that personally"
+1 and so true.
Paul
Hi Richlyn. I have same CHAD score (1) and am of similar age. I had PAF for 5 years and at first took a daily low dose aspirin at doctors suggestion, then stopped because it messed with my stomach. Later as my PAF continued Doctors recommended anticoagulant for me. We went over the risk and if I remember correctly the meds would decrease stroke risk from AF from about 4.5% to 1.5%. Risk was lower for sure—but risk was still there with the drugs. These were clinical numbers from drug trials for Permanent AF study participants—not PAF patients. Doctors were pushing Eliquis. I’m in US and price was $500 per month, so after weighing price versus risk reduction, I opted not to take anticoagulant (I know… I hear people gasping at this as I write) I went about 3-4 years with PAF with no anticoagulant and finally had an ablation in May of this year, and then was on anticoagulant for 90 days during healing. I was taken off after the blanking period because all was good with my healing process. I had bad joint pain and gout episodes while on Eliquis after the ablation. Long story short—When I had PAF the risk difference (4.5% vs 1.5%) wasn’t substantial enough to convince me to buy it. But then again, my middle name is “lucky”.
Thank you for your informative reply Seasicksurf. I did ask my EP if I should take aspirin but it was a definite no due to risk of stomach bleeds. Thank goodness we have the NHS here in UK for our medication. Hope you continue to be 'Lucky' with your recovery!
Exactly my thoughts. Reducing the risk from 4,5% to 1,5% is not worth it. My cardiologist said the risk is even less, 3,5%.
58 yr old female here and I’ve been on one for 5 years with no issues whatsoever. I would get on one asap if I were you.
Hi Richlyn. My risk is also 1 because I am female. I am 61, a very low BP, don’t drink or smoke, vegetarian diet and exercise a lot. I had a bout of AF for 8 days after having my covid booster, and I HAVE been put on anti coagulants (off the beta blockers now) dispute my protests. I think I am more at risk of bleeding than having a stroke but cant convince the doctors. Think they are playing safe in their area.
Waiting to see a cardiologist who might see it differently. Really don’t want to be on blood thinners any longer than necessary.
I’ve mentioned this before, but as it’s relevant will mention again what was explained to me by my Cardiologist. The risk of strokes relates to the fact that when in Afib, the heart does not properly clear a pocket on the side of the heart and this can coagulate over time. When you come out of Afib, the heart clears this pocket and if it has coagulated, then it would be push this into your system creating the risk.
So if you’re not in Afib for an extended period, then according to that info, you should be safe.
Thanks for that information Paul. At the moment my Afib tends to last a couple of hours and then returns to normal sinus rhythm. My Bisoprolol dose of 2.5mg is quite low. I'm trying lifestyle changes and hoping the episodes reduce but I need to get the word 'stroke' out of my head!
No problem, I’ve stopped taking Apixaban six weeks after my cardio version got me out of AF and back in normal rhythm. I have had some Atrial Flutter, but mostly for a few mins only. My Chad score is 0 and I take 1.25g of bisoporol…..so it sounds like we are in similar situations.
Hi, I was diagnosed around 2011 with PAF no anti cogulant given then 2018 was very breathless for weeks I was given anti depressants, one morning I couldn't stand up without being very light headed and almost fainted! Doc sent me to hospital as HR was high & BP low. Got bloods taken & they came back high for clotting do CT scan done & found lots of little clots in both my lungs that were obviously caused by my PAF over the 3 weeks!!! Was put on large dose of AC for a week & now on them for life. Thank god the clots never went to my heart or brain but still not good in lungs. I was told by a paramedic that I should of been on blood thinners when diagnosed so I would be questioning this with Doctors. I hope this doesn't scare you but I was told before that by my doctor that I didn't need them! Don't trust many doctors now & not having any vaccines as I know a few people that were perfectly healthy before there's then they've had a massive stroke & heart attack, got a stent in but is still very very breathless and others have had clots detected in legs.
Thanks for your reply Teresa - you was very lucky! I think I need to have a chat with my GP
Hi. Metoprolol made me breathless. Changed to Bisoprolol. But exertion equalled no energy. Sweating and tired.2 weeks ago I saw a private Heart Specialist who listens to all history.
Quick history found to have complex A.F on stroke day. 3 days later diagnosed thyroid cancer which causes A.F. I was given a carotis scan - perfectly clear. Embollic Stroke type Ischaemic.
Cancer removed 4 mths later.
A.F is constant on Exertion.
2 years plus Heart Specialist has put me on Calcium Channel Blocker. Bingo but take drug carefully. I fell 40 heart beats to 51.
Now on Diliazem 120mg and 2.5 at night Bisoprolol away from CCB.
Great I have kept a steady 132/72. 77 pulse.
I've had my booster booster 2 days ago. VISA in NZ. No trouble. Have drink and food around jab.
Take care.. Perhaps anxiety brought on adverse reactions. JOY
Hi Richlyn, When originally diagnosed with pAF and my CHAD score was 1, it was originally explained to me like this:If I didn't take apixaban, then over the next 10 years, then 14 of 100 people like me would have a stroke [from a blood clot] ,but if I did then 10 of 100 people like me would also get a stroke[from a bleed]. It was a really hard choice; more so if you are paying for the medicine. I think doctors' decisions are motivated by the horrors of a stroke, NICE also by the economy of medical intervention stopping bad events, BigPharma by profit.
I decided to take the apixaban and didn't get any side-effects.
Hi. Bob is correct. I was exactly like you. Had an ablation for SVT then PAF reared it’s ugly head for the next 12 years. I was under a brilliant cardiologist/EP. I was only on Bisoprolol and my Chadvacsore being female was1 and didn’t need anticoagulants. In 2016 I had a cyroablation which has stopped my PAF and so far I’ve been free of it. Take care
Thanks for your reply Blavet. It's great to hear from someone in exactly the same position.I was diagnosed with SVT in November 2020 after wearing a Zio patch for a week. I don't think it would have been caught otherwise. I was instantly offered an ablation. This was carried out in February 2021 and it was successful. From what I read it seems there is a better chance of success for SVT.
I saw my EP a few weeks back and got the PAF diagnosis after after a bad episode in October. He said the first route with PAF is meds and not ablation. Fortunately, I don't feel as ill with the PAF as I did with the SVT. I'm just hoping it stays that way and Bisoprolol keeps symptoms controlled.
Hope you remain symptom free.
Yeah ask the Docs, did cardiologist give a reason? (apart from Chads only at 1?). You might need to ask cardiologist rather than just GP? I’m 66 successfully ablation for AF, still on anticoagulant at 20 weeks pending follow up in Feb. The meds are a doddle for me - only downside is 50% increase in risk/extent of minor bleed if I don’t concentrate shaving! Also on Flecainide & Verapamil. Keep healthy, blood pressure low, stress levels low, alcohol low (or less) ……… Good luck.
Thanks for your reply.EP just said as my score was only 1 I was considered low risk as obviously there are also risks with taking unnecessary anticoagulants.
Pleased to hear your ablation was successful. Good luck with your recovery and keep your eye on the mirror when you are shaving. At least that's one thing I don't need to worry about!
Hi Richlyn. I am in exactly the same position as you. When my AF started I was 63. Exactly the same as you - short periods of AF and no other health problems. When I eventually saw a cardiologist I was put on Flecainide ( which controlled the problem really well ). The cardiologist told me the same as you, the same CHAD score . However he did say that when I got to 65 then I would have to go on an anticoagulant. They also monitor me yearly and if the problem gets worse they would review the situation with the medication. I am 65 next April and have an appointment with the cardiologist in February. Unfortunately my cholesterol has also gone up so it looks as if I will have to take a statin as well.😢. I wouldn’t worry about not being on the anticoagulant yet. As long as things stay the same my cardiologist was totally positive that there was no need for the anticoagulant. If however you continue to be concerned , ask for more information. I live in the UK , and I’m sure if I’d said I wanted the anticoagulation I would have been given it. I however am the opposite of you. I want to stay off as much medication as I can until I really have to take it. We’re all different.
My EP was confident that no AC needed as I have no other underlying issues at present and I was young! I feel exactly the same as you and don't want to be taking any unnecessary medication until I have to. Maybe I need to trust what the EP says after all he's the expert.
When I was first diagnosed I wasn't yet 65 but my GP had me on anti-coagulants that day; he said 65 years old is only guidance and that people don't all of a sudden develop a risk because of a birthday, the risk is there because of AF. That made sense to me.
Thanks for the reply Irene.Yes that is so true.
im in the same boat , im male 61 chads score 0 diagnosed with paf , taking bisoprolol 1.25 and dronederone, was told id be put on anticoagulants at 65 , but in the meantime i have to live with constant fear although i try my best to put it to the back of my mind, i take supplements like garlic oil and nattokinase and hope for the best . its a tough call.
If you cannot get your docs to put you on an anticoagulant then you might be able to put your mind more at ease by taking a combination of anticoagulant and antiaggregant supplements. The only supplements I am aware of that have some anticoagulant activity are nattokinase and lumbrokinase. Anti aggregants ( that stop platelet clumping) are easier to find and you don't have to take aspirin. But I think that you should explain firmly that your anxiety about stroke is affecting your life and it will not do your health in general any good and might very well provoke more afib. It might help you to take a magnesium supplement as this can help with anxiety. You should also be aware that anticoagulants come with side effects for some people and women are more often affected if the posts on this forum are anything to go by.
Thank you Auriculaire for your reply.That is very helpful information regarding the supplements. I have been taking Magnesium for some time and I will certainly look out for the others you mentioned.
Hi richlyn, I’m exactly same as you. Iv had three PVI ablations for PAF and ended up getting taken off anticoagulants 6 months after my third ablation because my chadcscore was 1 and the EP and cardiologist said I shouldn’t realy have been classed even 1 in the first place because they didn’t see any proof of any possible high BP whilst in their care and looking through my medical history, So although pleased about it, I did ask if I could stay on anticoagulants anyway just to be on the safe side and they said it wasn’t advisable. I told them that I’d read the stroke risk was higher for AF sufferers even when AF free but they still wanted me to come off them.
Thanks for your reply Jetcat.It's good to know that other people are in the same position and hear their different experiences on this forum. I certainly don't want to be on unnecessary medication but can only hope the experts know best.
I’m sure they do even when we think they may not be doing all they can for us.? But I do come in contact with doctors etc in my line of work and some have become good trusted friends over the years and I have asked their advice/opinion about my diagnosis/treatment and my concerns regarding anticoagulants with a low chads score and they have had no concerns at all. 👍
Hi. I had a stroke with A>F undiagnosed along with a diagnosis of Thyroid Cancer.
Have a carotid scan and thyroid look. That's how I was found!
I think you should have PRADAXA 120 x twice a day.
A friend 52 has just had ablation laser. He was not put back on anti-co-angulant. I would talk to a heart specialist. The good thing with PRADAZA it is reversible.
You can managemyhealth.
Over 200 is scary. My H.Spec didnt like 120 at rest.
Womens intuition. Worth following it.
cheri JOY
Thank you for all your info - most appreciated.
I’m 60, have had PAF for 8 years, on Flec and Diltizem….no anti-coag for same reasons as you.
I'm getting near daily episodes, some short, 1-5 mins and some up to 2-3 hrs, I'm concerned about stroke risk, I'm 49
Paf
PAF and amitriptyline
Anticoagulation
Paf and it's triggers
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