Have others experienced grief/depression from Atrial Fibrillation?

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My AF has increased to an episode most days - Doctors still fiddling with my medications to control it. I'm 67 and retired last year from Hospice nursing, I'm in a new relationship and was looking forward to travelling with my new partner and having a new, fulfilling life. I love playing table tennis twice a week, walking, gardening, had even bought a folding bike to begin a new activity etc but now AF seems to have robbed me of all that - either I'm tired with the medications or an episode is triggered by the slightest of physical activity. Again this morning I tried getting ready for table tennis but just preparing breafast put me into debilitating palpitations and dizziness. I feel great grief that the life I had expected has been snatched away - and like many the message from doctors seems to be 'Lots of people have it, you'll just have to live with it, try not getting so anxious!!!' All of which makes me feel patronised and not taken seriously. Sorry folks, am feeling bit down this morning after yet again making plans to have a little exercise only to be dashed.

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  • Posted

    Hi Maggie, I was just off to bed but felt compelled to reply to your post - I am 53 and have had AF on and off since I was 28.  I am sure that once your medication is sorted out you will feel much better and get some if not all respite from this bit of a life spoiler!

    We are all different, and I never got any dizzyness with mine so would still forge ahead with whatever exercise I was doing at the time and 9 times out of 10 the AF would subside and I could once again enjoy exercising.

    I do know how you feel, grieving for a life that you used to have - I have a bit of that now but from another health problem, but I think in your case you will either get used to it and cope with it much better once the anxiety is taken out of the picture or they will be great at controlling your AF with meds - have you been offered an ablation yet? just wondering how long you have been living with AF, all the best..

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    • Posted

      Many thanks for your reply and support Susan - I live in NZ by the way so my day is just beginning! I will try and remain positive about the success of meds - my Cardiologist really dismissed an Ablation as having too many risks and said I was too old - at 67! From all I've read it's worth taking the risk but I may have to try and go private and I have no insurance. Been having AF about a year, increasing in frequency but always these awful symptoms. I think I'm managing my anxiety better now but just feel AF is controlling my life at the moment. Seems as if AF crosses all cultures and peoples - good to know there are others that experience the same difficulties, even on the other side of the world!! Cheers Maggie
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  • Posted

    Hi Maggie

    Sorry to read your situation, so much AF is debilitating. I have had dizziness, breathlessness as well and AF is now more evident despite increasing the Flecainide to 200mg a day. I am 64, otherwise fit and healthy and as the medication is not controlling the episodes I have been offered the ablation which I will undergo in about 8-10 weeks in St Thomas's. It is worth serious consideration if offered as it would mean getting quality of life back and the risks are quite minimal. You should be offered the op if the med doesn't do the trick! All the best Robin

     

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    • Posted

      Thanks Robin. All the very best with your ablation, let me know how you get on. Did you suffer any side effects with Flecainide? My Cardiologist wants to try me on Amiodarone if Digoxin doesn't work, think this is a similar antiarrhythmic. I would definitely go with an ablation if offered one - think I may have to change my Cardiologist though as he definitely said he wouldn't refer me for one! Maggie
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  • Posted

    Hi Maggie - I live in NZ also ( Christchurch - Derek aged 65 years) and suffered paroxysmal AF for many years which became more frequent over time. I found the episodes quite debilitating and distressing as they prevented me from working normally and made me feel lousy. Once I reverted to sinus I felt great again.I had been controlling the AF with "Flecanide", but after suffering a heart  attack at Christmas time and having stents put in ( 3 off) I was told I can no longer take flecainide. Options given were - amiodorone ( toxic and not safe long term) or an ablation - ( only a 60% success rate and medium risk in my case and sometimes needing to be carried out more than once ) so I have decided to stay in AF with just rate control using "Metoprolol". Surprisingly I actually feel fine other than a little breathless at times. I sympathise with you as it took me a long time to accept my situation but I do feel a lot better now that I am relaxed about it and have stopped "stressing". My cardiologist ( Mr Ian Crozier ) is excellent and helpful, but I still follow up and search other sources in the hope that I will find an answer/cure. You may wish to check out the American site - "stopafib.org" . Meantime best wishes and remember AF is not life threatening and the more accepting you are the more pleasant life will be  - Cheers Derek R.

     

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    • Posted

      Hi Derek,

      Great to hear from another kiwi (although I was born in UK, came to NZ in 1972) I live in Nelson. Your message was very positive and I thank you for your affirming words. Maybe my symptoms will settle in time. Is Amiodorone more toxic than Flecainide? Another friend in Christchurch recommended Ian Crozier, he did her an ablation 10yrs ago. She now goes to Clive Low, I have thought about getting a second opinion from him and asking what my risk of an ablation would be. Once more thanks for your support. Cheers Maggie

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    • Posted

      Amiodarone causes long term damage.

      Google The History of Amiodarone. It's scary but it's true.

      It gave me eye problems, a tremor and an unsteady gait that led to loss of equilibrium and probably others that I did not associate with it.

      I stopped it each time I was back in sinus rhythm after cardioversion.

      When in AF last time I was threatened that if I did not take it for 8 or 9 weeks that I would not get my cardioversion. 

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    • Posted

      Yes Maggie - Amiodorone is known as the "nasty drug" as I am told by the experts that it has negative effects on liver,lungs,eyes etc to name a few. It is apparently the most powerful medication for treating AF but only recommended for short term relief. I believe Mr Crozier is recognised as the "guru" for advice on anything related to the electrical functions of the heart. He works at Ch Ch public hospital and I am not sure whether or not you can see him privately. Your suitability for an ablation can be explained by your cardiologist as it is not necessarily best in all cases. - Regards Derek R.
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    • Posted

      Amiodarone is only supposed to be prescribed for life threatening arrhythmias but they are dished out like "Smarties"  Also contra indicated for the elderly and those with uncontrolled or high BP. It clashes with many other commonly prescribed drugs.
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  • Posted

    Hi Maggie, I am in UK and the ablation risk of serious heart damage is about 3% quoted by my cardiologist with 50% success first time round and 80% second time around. Data only available over last five years so on-going success not known. No side-effects from Flecainide, I was checked out for any heart disease before it was prescribed. My own thoughts are that medication simply controls the condition if you are lucky but the op is a possible cure. In UK the op is about 20000 GBP okay if you have insurance and they will pay! Robin

     

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  • Posted

    Just a final comment on my discussion about grief/depression. I was on 10mg Bisoprolol which wasn't doing anything for my AF.When my GP changed me to Diltiazem she halved my Bisoprolol and I subsequently halved it again and started taking the 2.5mg at night. My energy improved and the depression magically lifted. Before I was tearful over the slightest thing but this has disappeared thank goodness. Whether it was caused by the Bisoprolol or not I'm very glad it's stopped. Thanks everyone. PAF continues however!
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