Feeling worse after diagnosis: I was... - AF Association

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Feeling worse after diagnosis

I was diagnosed by my GP with atrial fibrillation 5 weeks ago and prescribed verapamil 40mg x 3 daily and riveroxaban 15mg once daily (taken with a meal). I felt quite well prior to the diagnosis, apart from some breathlessness which I put down to being obese, and have had no other symptoms - I only went to the GP about a painful foot! Since then I have got gradually worse - breathless on a daily basis after very little activity; profuse sweating and the most dreadful fatigue - I go to bed most days and sleep for a couple of hours! This is not like me. The EP I saw last week has arranged for an echocardiogram this Friday and has said he wants to change verapamil to bisoprolol. I'm not convinced about any of this to be honest because I am feeling worse since taking the medication. I'd be grateful for any advice/comments. Thanks.

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Af needs to be controlled or long term it will make you heart work so hard that it starts to become enlarged and that is a bad thing. The anticoagulant (Rivaroxaban) os for stsroke prevention as AF makes us more prone to strokes. This drug must be taken with a fatty meal by the way.

Controlling heart rate will of course cause fatigue and the whole process of sorting out what drug works best for you can be a long drawn out one. It has been said many times AF is a long journey.

My best advice is to go to AF Association website and read all you can so that you understand enough to discuss your treatment intelligently with your EP Knowledge is power!

We have all been where you are now and trust me when I say it does get easier with time.

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Hi BobD- gently curious the comment about taking Rivaroxaban with a fatty meal? I didn't know that. When I read the "instructions on the box" says- take with food- not specific fatty food. I did read that some one on another A-Fib site suggested taking it at night, with supper, is that OK? I am new to AF.

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There was an Admin post a couple of days ago regarding a new warning from the manufacturer stating that this was the case. We have known about it for a while and do tell people.on here . A snack is not enough and it needs to be a proper meal with some fat in it so taking it with a slice of toast say at breakfast is not enough but a full english is fine. Depends what you mean by supper which to me is a snack before bed but I take ALL my drugs before dinner in the evening.

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Not wishing to be contentious but I was told by the anticoagulant clinic that a snack was sufficient. Perhaps the new guidelines haven't filtered down to the people who disseminate this vital information?

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Obviously not. This is dangerous. The new report showed that some people had strokes as a result of not following guidelines. The drug needs fat in the stomach to be absorbed. I find it unbelievable that you had this advice as we have been advising people for probably a year to take it with a proper meal. It refers specifically to Rivaroxaban.

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It was during the timed tests to gauge if there was sufficient in my bloodstream- the first lot of tests were negative (I'd had a biscuit with the dose on their advice about a snack). My pharmacist told me about having a meal with my dose and so the second blood test showed the level was fine.

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Just to add a little to BobD's advice, lifestyle changes can make a massive difference to how AF may affect someone with AF. Given what you have said, it really is important to shed the pounds but in a controlled way as crash diets seldom work in the long term. It was just over 5 years ago that I was diagnosed and like you, I was a fit healthy 68 year old who rarely saw a doctor. I wasn't "obese" as you put it, but I was carrying a stone or so too much, but the sheer fear of being told I had a heart condition soon changed that. I had sleepless nights, went out walking all hours of the day and night and as my wife will attest, I became unbearable to live with (well almost!). Beta blockers can often have side effects not too dissimilar from AF symptoms but with a bit of trial and error, over time it will improve. The good thing is that you are on the right treatment track seeing an EP. Most medics try Bisoprolol because if it can be tolerated it does an excellent job of controlling heart rate, but if it becomes a problem, there are alternatives. Follow Bob's advice and find out everything you can because that will help combat any anxiety you may be experiencing which is probably contributing to the way you are feeling at the moment.......

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Sorry to hear you have AF. It is hard to be patient while the right meds for you are found but please do not throw the baby out with the bathwater. I have heard many times people saying "I felt fine till I went into hospital / saw the doctor" . You are unfortunate to have AF but very fortunate to have been diagnosed before a complication such as stroke occurred and to have seen an EP so soon ( in NHS terms) after your diagnosis. Lots of help here.

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Good Morning,how are you feeling today. It is quite scary when they first tell you have got AF. The breathlessness will calm down. You say you are obese is this from looking at a chart or are you without being cheeky rather overweight. If you are take a day at a time you will be surprised how losing a bit of weight will make you feel much better. I am on riboraxavan and have never had any trouble. Take after my evening meal with my other tablets. Been on numerous medications but found the bisoprolol the best plus my flecanide which I wouldnt do without. Anyway back to you it is very early days so as everyone is saying read as much as you can about AF everyone is different but the doctors will find the right medication for you. By the way this AF thing is part of you now, think of it as something you will get to know, make a few changes and you will start to know it better like making a friend out of an enemy. Millions of people suffer with it even the most elite of people. Do you understand what I am saying. Please keep us informed of how you are. Lots of Hugs try and have a good day.

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Hi I was where you are last year felt horrible and scared on bisoprolol and apixaban and now starting to get my life back it take time for tablets to work so stick with it you will get there

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Awe poor you, we’ve all had that awful time to start but brighter days will come, seems hard to think that will happen right now I know, as I’ve been that person. Getting the drugsto settle takes time...bisoprolol from what I’ve heard in this forum lots of us take....I take it, and it keeps the heart rate lower which is good. When you start it it antake a while to settle in your body, but I have been happy with it .....well once it settled in!.....trouble is withthese tablets , you instantly think it’s your heart, but it’s the tablets causing the tiredness etc as they settle in.....then when you have all this happen you worry and that makes it worse.......viscous circle.......personally bisoprolol is tolerated well once it settles so take the ep advice you may find it gives much better choice of tablet.....

As for long term once you get the right balance tablets you will settled down to a much more normal life....honestly I never thought I’d be normal when I was diagnosed and the tablets played up......but as itsettled and I joined this forum and got to read all these wonderful folk getting in with their lives itgave me hope.....and low and behold.......life indeed became normal....the afib beastwas kept at bay by the tablets..........read up as much as you can in this. Massesof us have had it.......

Chin up........good luck, try the bisoprolol, and relax as much as you can...I know it’s hard,

Sue

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Hi marlathome. I can sympathize with how you feel. I was feeling fine except for some breathlessness before I was diagnosed with permanent AF. It only came to light when I had a new blood pressure monitor and the little heart kept flashing. Info told me to go the Dr and that was it. It was a big shock as I had not been to the Dr for 8 yrs. I was put on Edoxaban an anticoagulant and 1.25 mg of Bisoprolol, immediately felt much worse with no energy, wanting to sleep and a fuzzy head. I stuck it for about 3 months but went back to the Dr and told him and he took me off the Bisoprolol because it was slowing my heart down too much, thus the feeling of fatigue. He said perhaps I didn’t need it and I am just now on Edoxaban and am feeling fine. Try to to do some walking, increasing it gradually and you will be surprised at what you can achieve. I just stop for a couple of minutes when I get breathless. Take heart, we are one of millions. I am still going travelling, am in my 80’s, still love my garden and live alone. I am sure when things will settle down and you come to terms with A F you will feel better. Good Luck!

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Hi so your only on a blood thinner/ anticoagulant

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Yes. Bisoprolol, even that small dose, slowed my heart down to the early 40’s and that is why everything was such an effort. When I came off it, I gradually began to feel more like my old self and had by this time come to terms with AF. I think that once you accept this fact and realize it is not a death sentence, you relax more and get on with your life. As I said, Iam in my early 80’s, not long returned from quite an arduous tour of Northern India and loved it. So take heart, try to think positive, relax and enjoy the rest of your life.

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That's amazing! It's stopped me in my tracks to be honest and now I find myself constantly monitoring. That's what is so upsetting but I feel so much better reading your reply - thank you. Can I ask do you take any medication for afib?

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Hi marlathome There is no medication for Afib. You can have various procedures to try and right it but I am passed all that and the Dr thinks I had it for months or longer before it was diagnosed. That is why mine is permanent AF. Apparently the longer you have it without being detected the less chance you have for your heart to go back to sinus rhythm.

Everyone is prescribed an anticoagulant of some sort, I had the choice between Warfarin and one of the newer ones and I opted for the newer one because you can eat more or less anything with them but you have to be more careful with warfarin and there is less need for monitoring. It is amazing what food and vitamins have blood thinning actions and you need to be aware of this. The reason we are prescribed anticoagulants is to help prevent stroke. I have had no reactions from Edoxaban just take one tablet each morning and I feel fine and lead a pretty well normal life. I do take CQ10 which the body makes naturally but declines with age, also magnesium, both help the heart and brain.

One other point, like you,I was constantly monitoring, even bought a Fitbit but now I never wear it, very rarely check heart rate etc and just go by the way I feel. I think you get anxious if you see a reading too much up or down and that is usually down to nerves or anxiety.

Hope this helps you a little.

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No I'm also on verapamil which my EP wants to change to bisoprolol.

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The shock of the diagnosis and the medication will have strong effect on your body. I remember feeling very exhausted and breathless at the beginning. When he changes you to bisopropol it will still make you tired and breathless but it does improve and your body learns how to pace your self. I found this forum a godsend learning all bout AF and the treatment I could have. Ablation saved my life and I would not have gone after such treatment without this forum.

Take care and rest when you need it.

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Hi ,just a quikie the cardiologist put me on beta blockers and I discovered after a few miserable months that I am allergic to them and made feel dreadful ,try calcium channellers {adulate] best of luck P.S. you cannot die from A.F.

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As someone said on here last week it's not the AF that is the problem it is the company it keeps.

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If you cannot tolerate the Bisoproplol (and many here have found it difficult) you could ask to change to Nebivolol. I changed 2 months ago after weaning myself down to a very low dose of Bisoproplol but I saw a big improvement on a higher dose of Nebivolol. Also look at the Dr Gupta video about magnesium supplements. Getting your meds right for you is crucial . If your meds make you feel lousy this will induce stress and be counterproductive.

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Regarding magnesium, I was surprised to hear from my London EP the other week, that magnesium is not always good news, and there are studies that show for some it can be pro arrhythmic . I had not heard that before and people here who use it seem to find it helps.

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Perhaps taking too much or too much at once is the problem. I spread mine out into 3 doses of only 100mg each . I take a mixture of malate and biglycinate as this is supposed to be the best for pain ( of which I have a lot) and it also has taurine in it and some B vitamins. The overall amount is less than the recommended daily dose for women but I try to eat magnesium rich foods as well. The problem with depending on food alone is that many fruit and veg have considerably less mag content than 50 years ago due to depletion of soil levels.

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Hi I was diagnosed last year and was a nervous anxious wreck when I first ventured on this lovely place Time is a great friend along with medication eventually I'm now back in full time work and covering old senior position when others are on holiday .Support and advise by friends I have made here helped me massively Everything was but what if Now it's well If it's going to happen it will despite what I do to try to stop it so I tend to try not to worry too much Odd palpitations I now try to breath through and concentrate on what I'm doing You will find your own way to cope with it all in your own time but always remember help is always there

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Thank you to everyone for taking the time to respond - I really appreciate it. I realise afib is not an easy fix but I think my problem is compounded by the fact that I have no thyroid gland and have been under medicated for 30 years. I've had to see a private endocrinologist, thanks to my father leaving me some money, and discovered that I am genetically unable to convert T4 to T3 and for all this time I've been taking the bog-standard T4 medication. The Endo has prescribed me NDT and I've been taking this for the last 4 weeks which is bound to affect my heart, for the better eventually I hope but, again, the dose is trial and error. All will become clearer on that front when I see him again on 6 September.

I also have widespread painful arthritis - unsure if it's autoimmune in nature, but since being prescribed Rivaroxaban I am told I can no longer take anti-inflammatories for the pain. No other pain relief is available to me except opioids and I really don't want to go down that route so I'm in constant pain.

I suppose the Afib diagnosis feels like the final straw. So sorry to moan - I know there are people much worse off than me. I'm supposed to be going on a holiday of a lifetime in September with my family and if I feel the way I do at the moment, I don't think I'll be able to manage it.

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You are entitled to moan after been mistreated re you thyroid for so long. Not surprising that you are overweight and have AF as a result.

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Undermedication is par for the course with the reliance on TSH alone for dosing which is usually what happens. Be careful with NDT. Pigs have a different T4/T3 ratio to humans and it is easy to end up taking too much T3. I used to take a combo of synthetic T4 and NDT . I felt well but my TSH was almost completely suppressed which panicked my endo when afib struck. Now I am back to T4 only and do not appreciate the weight gain . My TSH had risen to over 3 last time which I feel is far too high for me and the doc no longer tests my free Ts. Grrr!

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Probably too much verapamil - it slows your heart down. Too much of it and your body doesn't get enough oxygen. In any case, you might try cutting down on sugars. Here is what I found that stops Afib:

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After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer. If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt??

Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer

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Thanks - it can't be sugar for me as I have removed it, in all its forms, from my diet. Also I'm gluten free. Dehydration might be a trigger though as I'm very bad at drinking enough water.

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Hi, l was just like you...went to the Doc. for a painful arm

after a fall and he diagnosed Afib. I'm now on anticoagulant Apixaban and to be honest l've not felt

myself since the diagnoses. There is nothing to be done

but go with the flow. I have chosen not to have any

procedures but just to stay with medication.

You are not alone. It will settle.

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So are you just on Apixaban? I've wondered whether I'd feel better just taking Riveroxaban.

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Can I just say I think you are all so generous to share your knowledge and advice - I've learned more in the last two days than I have in the 6 weeks post diagnosis. So very glad I found this forum.

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I went from 120mg Verapamil to 360mg over a number of years and felt fine on that medication. I'm wondering if perhaps you could ask if they could try increasing your dose? When that dose was not enough to control my af cardiologist prescribed Bisoporol which didn't suit me - felt quite rough this time last year. He then put me on Diltiazam 240mg which is similar to Verapamil (calcium blocker) for me it has none of the side effects of Bisoporol which quite a few on the forum have mentioned. We all react differently to the meds & so it can take a while to find the ones to suit you. I also take Rivaroxaban - with evening meal. Do let us know how you get on

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I take bisoperol find it ok for my heart palpatations, was put on riveroxiban for Af it made me aneamic.

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