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Soldiering on.

Hello everyone I am now 79yr old lady who has had PAF for twenty years. I have only been diagnosed with it for the past six years. But nothing has changed. It is gradually getting worse. When it first happened I thought it was chronic indigestion. For fourteen years I persitantly went to the doctor for these very distressing episodes. Until one day I mentioned that I passed a lot of urine when I got these bouts. One doctor looked at me and said that it could be your heart and the next time it happens I should ring for an ambulance which I did and sure enough he told me I have PAF. I did not know what this was, I had never heard of it.

I get a lot of pain in my chest going up into my neck and jaw which is very distressing which has now been diagnosed as angina. This angina only occurs when the AF starts and immediately disappears when the heart goes back into sinus rhythm. I have a pacemaker inserted and take sotalol at a high dose. But the sotalol does not seem to be working. I am on walfrin of course. I am about to go back to my doctor to try a different treatment.

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Hi & welcome to the forum.

Have you seen all the information on the AFA site about PAF and the various treatments? Have you seen an EP ( Electrophysiologist)?

I would mention that Sotolol is no longer recommended by NICE for lone AF - that is AF with no other heart issues.

Lovely painting by the way - where do you live and is that your hobby?

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Thank you for your comments. I am afraid I do have underlying heart problems only diagnosed last year. I had an angiogram which showed I had three arteries 50percent blocked. Which limits what drugs I can use. I am going to ask my doctor if I can try Amiodarone which is the only alternative for me. I hear that this drug has side effects that may not be good for me. Whilst reading on this site I was impressed with the talk on the vagal nerve. Perhaps this may pertain to me. Some of the symptoms I recognised. Also, perhaps a AV ablation, although perhaps this should have been offered to me years ago as my age may be against me now.

Thank you for the comment on the painting. Yes I painted it and it is a hobby. I live in the Cotswolds.

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Our similarities are amazing!! Same age same late diagnosis same drug same pain etc. I took sotalol for two years when it stopped working. They then tried bisoprolol and up to now that has been successful. Like you flecinide was not a drug I could take because of artery problems. We live in neighbouring counties and a hobby of mine is painting!! I soldier on and take life as it comes as yourself The weather has taken a turn for the better and we live in a beautiful part of England so best wishes for the future 😄

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Amazing that we find one another when all these years one thinks one is so alone with this frightening thing. I was taken off stotalol four years ago and given bisoprolol which worked for two years. Then it started to do very strange things. My heart rate would go down to 28 then shoot up to 150 which left me in a terrible state. I was taken into hospital and the said I was in braca cardia (spelling not right). Anyhow a pacemaker was implanted and the then decided to put me back on sotalol but at a high dose which they can do as the pacemaker would prevent the heart going below 60. But the sotalol is not keeping it in control. I am going to ask him if I could try Amiodarone. See what happens with this. I do sympathise with you. But am pleased that the bisoprolol is working for you.

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Could you tell me what you took to relieve the pain when you had an episode? I have a spray that I can use which is sprayed under the tongue but this is of little use. I was wondering if I could use a pain killer. Thank you.

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They just give me paracetamol either intravenously or orally depending on how bad the attack is. Once they tried morphine but it made me terribly sick so that was a no no! I just have to put up with it as best as I can.

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The spray should help as it dilates the blood vessels if it's not maybe it should be reviewed

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I told the doctor that the spray does not relieve the pain. But he just dismissed it. He said there was nothing else to give me.

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Was it GP or hospital consultant?

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It was my GP but he is also a cardiologist.

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I think maybe it's time to ask to referred to an EP how long has your GP been out of cardiology? Surprised no treatment for your blocked arteries but maybe there is a reason

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I would just like to clarify one thing re drugs. Rhythm control drugs do not have receptors in the body like opiates so they don't "stop working". The reason they are no longer affective is progression of the AF which as most know is inevitable due to the nature of the condition. AF begets AF is a well know mantra. Once that happens paroxysmal moves to persistent which could become permanent and then rate control is all that is available. As you say Junoesque maybe you should have been offered an ablation a long time ago but if you have only been treated by you local doctor or cardiologist it seems unlikely that would have been offered.

Lovely part of the world you live in. I pass though on my way from Devon (where is is pouring down right now) to Silverstone quite regularly.

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Thank you for your comments. I not know anything regards drugs etc. I am due to see my doctor this week who by the way is a GP but also a cardiologist. He is going to talk to me regards the way forward. I have in the past been treated by a team in a hospital. My doctor has told me that my case is complicated, whatever this means.

Yes this is a lovely part of the country.

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Hello - My mother has had afib for over 25 yrs now and she is 91 yrs old. She sees a cardio/EP and he has her on Metoprolol - 100 mgs a day, Eliquis, magnesium, Losartan, Lasix and she has a pace-maker which keeps her heart rate from going too low. She also has tachycardia and heart failure. This may sound bad, but actually she does rather well. She is in afib over 50% of the time, but at times she doesn't realize it. (It wasn't always this way however). When she does have an episode, she sits in her recliner and does deep breathing exercises and a simple form of meditation. She say this helps her a lot. She doesn't get worked up about it anymore. She figures she has lived over 25 yrs with what used to be scary episodes for her, and she is still here. She has long-ago given up trying to figure out what triggers them. Her cardio doctor offered an ablation or Amiodarone if she wanted to try to decrease the episodes, but she turned both options down. She did not like the side-effects of the Amiodarone.

She still exercises and gets out and about daily. So I suppose she has acclimated to the condition very well.

Love your painting. This is a form of meditation too.

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Thank for relating your Mothers condition and how she is coping with it. I am also coming to terms with the episodes. It is the pain and feeling so light headed that is the worst part. The fear of going on journeys by myself and going on holiday. I would love to go to Australia to visit my son. But the thought of me having an episode on the plane feels me with fear. I must try to not be fearful of it after all I have had so long. This site is so good. It gives me hope at last. Your Mother is such a brave soul. Tell her hello from me and that I will take her advice and do some meditation.

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I can understand not wanting to fly. My mother hasn't flown in over 20 yrs, and I would be hesitant to see her do so - even if I was with her. I'm not sure how that would go, but I would feel helpless if she was far away from home and her doctors and she ran into trouble. We just go around town now - within her comfort zone. But - she is 91 hrs old too. I don't think her doctors would advise her to fly - just because of her age and certain health problems.

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Are there any plans regarding your blocked arteries?

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No afraid not. When I had y angiogram done last year the two consultants who performed it. Said that the are leaving it well alone.

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wonderful painting!!

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Hi! I also have 'lone Afib' and had a pacemaker fitted, was on Sotalol, then it stopped working and then Bisoprolol, leading to Flecainide, which I had to stop as it didn't suit me at all. I am now just on Bisoprolol and Rivaroxaban for anti-coagulation. I shall be having a cather ablation in July, in London. I have no idea what pills I shall have afterwards but I would love to stop the Rivaroxaban as I am afraid of a bleed. I'd rather have NO pills! I am 72 years of age but healthy in every other way.

I was upset when a friend I haven't seen for years, only this week, decided I had a heart problem due to not eating enough. I had anorexia nervosa many years ago (50), and got over it without medical help or any other type of care. I think I eat normally, love fish and vegetables, eat hardly any meat and don't eat cakes, biscuits, crisps, chocolates etc as I actually don't like them. I do eat though, I just don't over-eat, like so many people today! What do you think? I was upset as she got quite angry with me about not eating enough, but she only saw me for 2 days after a period of 10 years and surely can't tell what I eat generally, at home. My doctor and when in A&E, find nothing else wrong with me, apart from the AFib.

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I would not be too concerned with what your friend said to you. If your doctor is not worried about your weight why should she be. You know yourself what you should and should not do. I have the opposite problem to you I find I cannot stop eating and have put on a great deal of weight in these past six years. Actually it is since I have been taking all the medication for this Afib. I was put on Sotalol twice. But because I have a pacemaker inplanted they have upped the dose from 80mg a day to 320mg per day taken twice a day. But it is still not doing it's job. I hope to see a Consultant soon. When is up to luck. I have seen plenty of specialists in this field, with little result. I may be offered a AC ablation. Scared of this though. I too am on anticoagulant called Acenocoumatol same thing as wolverine, also Lasartin 100mg for blood pressure, mono nitrate for angina and furosemide because the other tablets I take makes my ankles swell. All in all not a happy bunny.

Don't let it all get you down. It was a great relief to me to come onto this site because at last some people are having the same problems as me and somehow it makes it not seem as dramatic and distressing as before. Life is not the same and never will be.

Try to not let everything get you down, you have a double whammy to deal with and I feel for you. Meditation helps. Think nice thoughts so that your heart will be relaxed. Enjoy nature, there is a lot to be gained there because nature is so therapeutic. Look up google put in'hug a tree' I was surprised what I read, you may be too. Good Luck.

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Beautiful painting

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Thank you Mazzy. Hope you are in good health.

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Sort of I've got blood clots a PE on my lung and one in my right leg, so on warfarin, but also got water retention these last few weeks, they checked my left leg to make certain it wasn't another clot or my heart but all seemed ok, I'm still concerned about it though but don't really want to go on a water tablet! I wouldn't be able to leave the house! Lol

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Keep your chin up. Not nice coping with illness is it?

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Thanks take care

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