Living with AF

Hi all

I'm suffering from frequent attacks of AF since my open heart surgery in 2000 , at the beginning it was once a year , but in the last 2 years it is accruing a lot and really scary

Sometime with palpitation others like the heart has stopped suddenly with a lot of missing beats , then i run to ER where they diagnose those attacks as panic for few years

last year it was recorded for the first time as atrial flutter and i had a cardioversion and put on beta blocker which really help me to reduce the attacks frequency

recently attacks are fewer but stronger , where i met a famous doctor in UK specialized in electrophisiology and he put me on flacinide 100 mg twice a day

my last scary attack was before yesterday while using flecanide and i had the second cardio version yesterday again ,does that mean medication suit me?

i want to know more about the symptoms since from what i read i have worse symptoms

i feel hot in my chess and throat , cant talk , breathless , heart got crazy all beats are irregular , it lasts between minutes to 15 minutes and when i reach hospital it is better and diagnosed as flutter

so what was the scary initial part of it? is that a stroke?

im on blood thinner also which is highly required in such cases

Im suffering from stress because of the above , scared to drive,travel , meetings , family gathering since it can happen anywhere and anytime , so embarrassing :(

i wanted to share my suffering with others to help others and get others help

what i noticed it is more frequent after heavy meals , stress , changing sleeping times , migraine

please share with me your experiences since i don't know anyone having the same case around

Doctors explain to me that it is a long term disease and i should learn to manage my life with it

how to do so?

im currently on healthy diet , my weight reduced

Trying to manage my activities since im very active working woman

Taking zanax from time to time

having body massage for relaxation

what else can i do?

8 Replies

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  • Maitha, Welcome to the forum.

    I can relate to your story. I also started about 13 years ago with 1 attack a year and it increased to 2 or 3 a week after 10 years. I also thought I was having panic attacks in the beginning. Until one really severe attack that put me in the hospital where I was finally diagnosed with AF.

    I am happy to hear that you are seeing an EP. They are the experts with AF. There are many different Rhythm Control meds to try. If Flecainide doesn't work for you then others might. It's a hit and miss process finding the right med.

    You are asking about symptoms but that's hard to answer. It's different for everyone. Some can not even tell when they are in AF and others have to head for the ER because they are so bad. I had very severe attacks with my heart rate around 185BPM and my blood pressure would drop very low, I had cramps, shortness of breath dizziness and very bad headaches.

    Please go to the main AFA site atrialfibrillation.org.uk/ and read all you can about the cause, symptoms, treatments, medications and procedures for AF. The more you know about AF the better your outcome will be. It also will overcome the fears that come with the condition.

    Af has been tied to Stress, Heavy meals, Sleep Apnea and others. It can be basically managed, but you don't have to just accept it. There are meds that can partially control it and there are procedures that can cure it. After 14 years of suffering with AF, I had an ablation and have been around 17 weeks with no more attacks. There is also a pretty good book out there that really helps you to understand AF and what you can do about it. It's called "Beat Your A-fib" by Steve Ryan. It is very helpful.

    Know that you are not alone with this. There are millions with this condition. All who write on here have AF and we understand exactly what you are going through. Please ask whatever questions you have and also write when you just need to "Sound Off".

    Again, Welcome and we hope to hear from you soon.

    Tim

  • Your reply make me cry

    Thanks for sharing your experience

    Im these days tired laying in bed after a bad attack and the cardioversion

    Muscle pain dizzy weakness

    More than ten years with suffering and I was thinking im the only one where doctors didnt diagnose my case

    Im happy to hear you are better now

    Ep may be recommended later for me in case medication didnt work well

    Im afraid that I may reach a point I cant work anymore since I had three attacks till now at office which is embarrassing

    Thanks again

  • Hi

    So sorry you are suffering the way you are. Don't wait till later when the meds don't work, get referred to an EP as soon as possible, they really are the best.

    you really could be just in Atrial flutter as that is how I~ started off and it produced the same effects as AF. Try not to panic, easier said than done I know as we all seem to when we start off.

    Good luck and remember dont let the bugger grind you downn

  • I agree with Mum. Don't let it beat you. It won't kill you although it may not feel like that. For years I have been trying to get across to the medical profession the mental aspect of AF and how difficult it is for some people to work through and have a normal life. Many doctors still do not understand this and think of it as a minor inconvenience since it is not life threatening. Provided that your stroke risk has been assessed and if at risk you are properly anticoagulated then dealing with your symptoms is the most important thing. Many people find relaxation techniques of help as well as "mindfulness" and even hypnotherapy to relax as there is no doubt that stress becomes a vicious circle adding to the problem. Forums like this have only been around for a few years but have proved invaluable for many of us and as Tim says, sound off if you need to and it helps. We are all fellow travellers on this long journey which is AF.

    BobD

  • Thanks alot

    Your words means alot for me since as you said nobody understand suffering from AF

    I went to UK last month and met a very famous electrophysiology there and he recommend medication only since my flutter is on and of from seconds to minuts and recently for days

    I will consider stress relief methodology and try to fight daily to live as normal as possible since all my family are suffering also

    Thanks again and keep in touch and all the best for all

  • I received my doctor recommendation after my second car diversion that flecanide is not suitable for me and I should think of ablation

    So scared , depressed

    I have been suffering from my heart since my first open heart surgery in 1987 then second one in 2000 and AF Since that time

    I'm fed up from being sick and customer to ER

    I'm completely healthy most of the time unless if I had AF attack which make me collapse from time to time

    Should I have ablation or keep on living with attacks.

    My doctor chilling in uk mentioned few scary risks and 90% success factor

    Really confused and scared

  • After suffering what I thought were panic attacks for 15 years, I was finally diagnosed with paroxysmal AF in Feb 2010. Various medications failed to help, so in October 2011 I had an ablation. It worked for a while, then after a few months attacks started again. I had to wait until September 2012 for a second ablation, and became very depressed.

    I felt guilty for feeling sorry for myself, but kept having to go to the ER for help controlling the very fast heart rate (over 200). I found aromatherapy massage and breathing exercises a great help at this time.

    In Feb this year I was in hospital with pneumonia and this caused me to flip back into AF, so in two weeks' time I am going for my third ablation. It has become depressing again, not knowing when I will have an attack and having to apologise to friends for always having health issues.

    But it's worth finding out as much as you can, and getting support from a forum like this. No-one who hasn't had AF can understand how worrying, depressing and just plain exhausting the condition is.

    I hope you soon feel able to cope with your situation, and that you find a treatment that helps. Good luck.

  • I can really understand your feelings since my situation is similar to yours

    I had been advised to have ablation but I'm still not able to make that decision

    I'm embarrassed from my husband , family , friends of being sick most of the time , trying to hide my suffering and keep my image as strong lady

    One day I'm happy other so depressed

    Last weekend we were having family gathering when I had very bad attack in the midnight in my parents house where my sisters get me to ER

    It was atrial vib. Where the medication I'm getting convert it Into atrial flutter

    My sister got a panic attack from seeing me in that situation

    ER team knows me well since I'm a frequent visitor , my colleagues at work considering me as sick employee even they don't know what is wrong

    No one will understand our feelings unless he had it

    Hope your ablation will be successful this time and you will be AF free soon and thanks for sharing with me that and for your kind words

    Maitha

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