Anyone with severe, painful and debilitating AF/SVT symptoms.

[meadfoot]

What are your severe symptoms like, how long do they last and how do you deal with them. How do they impact on your life at the time of an attack and in between. Thanks.

[Rellim296]

I don't have many symptoms with my AF, luckily - I am aware that normal sinus rhythm has been replaced, every now and then, and you never know when or for how many hours, with mild cardiac chaos. It departs as mysteriously as it arrived. It has been annoying rather than scary but the impact on my life of these seemingly trivial episodes been devastating. AF now rules most of the time whether it's present or not. Takes me 10 minutes to put my week's pills into the little boxes I use for convenience and I am taking up huge amounts of time at my GP's surgery on INR checks.

[Hidden]

When I was diagnosed I didn't have attacks, I just had AF round the clock. It was completely debilitating. I could hardly stand or walk towards prior to being given drugs. Symptoms were feeling faint when standing (not enough blood/oxygen to my head???), my heart knocking and thumping all the time, slightly raised heart rate (I have a high rate as normal though).

I was diagnosed 10 years ago, put on various drugs to try, found Propafenone which worked, then eventually had a successful ablation after 2 years because of drug side-effects. Now on different drugs but well under control.

Regards

Koll

[dedeottie]

I would never have described mine as severe or debilitating but it was there for 75%of the time. I could feel my heart beating irregularly and it made me on edge. The rate never went above 130 but when it was that fast my blood pressure plummeted and I felt light headed.I was and am fairly fit (rode and looked after 4 horses daily plus full time job as infant teacher ) and my doctor said this was why I was able to cope well with the symptoms . Now I'm on meds that have stopped the A.F. for now it's only now my quality of life has dramatically improved that I realise how bad I was feeling. Sadly I had to give up riding when I went on warfarin. I was devastated as it has been my life long passion but other things have developed and taken the place of horses in my life. Everything happens for a reason. We took the opportunity to move from lancashire to south Wales to be closer to our son and his wife and now I'm about to be a grandma so I'm really thrilled we are closer. Also because of A.F. I have been encouraged to clean up other areas of my life in the eating and drinking department so I am generally in a better place than before. Sorry about the ramble not sure if you wanted to hear all that! X

[Buffafly]

My severe symptoms, which I am glad to say are now very rare, are palpitations ( mad giant butterfly!), breathlessness, dizziness, lightheadedness, upset digestion and spasms of pain in the upper chest and neck, not necessarily in that order. What I do depends on how I feel although I don't/can't do anything strenuous. My first attack went on for weeks but now attacks only last for minutes to hours. The last one happened when I was shopping in a supermarket and I would have liked to sit down quietly by the Pharmacy for a bit but I thought they would probably call an ambulance to be on the safe side so I carried on shopping and it went away! That was not very sensible and I wouldn't have done it if I didn't know my heart itself is healthy.

All the same it is scary. Also I often feel very tired, can't blame the meds as I was worse before. I am not on Warfarin though maybe I should be, told to take aspirin which I can't tolerate. When I was on Warfarin I found it very difficult because my INR would not stabilise so I had to go for frequent checks, facing grumpy nurse who thought it was my fault.

[jeanjeannie50]

My AF has been debilitating for the last 5 weeks. My heart is racing constantly and it exhausts me. I'm told it's atrial flutter. I get good and bad periods, when it's bad I can hardly walk a hundred yards and walking around the supermarket is a struggle. Last week I was grateful to hold on to the supermarket trolley, it felt like I was using a much needed zimmer frame!! Oh the rudeness of other shoppers because I was walking slowly. I'm ashamed to say that until now I probably behaved a little like those impatient people and tried to get in front of anyone slow.

I'm normally out doing long walks, cycling etc., so this has come hard to me. I have a cardioversion booked for next Wednesday and I'm praying that it will work and last.

[Ang3lc4ts]

Good morning, I definitely have very severe symptoms with AF. I have about two or three episodes a week varying from 6 - 30 hours. As I also have severe osteoporosis, having fractured a total of 8 vertebra, pelvis, sternum and ribs due to falls, I am extremely careful not to do anything physical as my blood pressure drops and my legs and arms feel like lead and I get really light headed and feel faint for most of the episode. Because of my bone problems, all I can do is rest. How people can go to work feeling the way I do is beyond me and they all need a medal! I do not venture out of the house at all, which is torture as I am a lady that lunches 2 to 3 times a week!

I am on the list for pace and ablate as my heart rate is all over the place, as high as 160bmp to as low as 29, also with pauses! None of the medication seems to work for me, I am on Bisoprolol at the moment.

I am fine in between the episodes and often think perhaps they have gone away!

Hope this helps. My only consolation is that there are people with worse illnesses than this.

Di

[CDreamer]

Having just had 2 ablations one of the first things I noticed is NOT being aware of my heartbeat I think for the first time in my life! The rest were very similar to everyone else, palpitations, low energy which worsened over the years of AF, fatigue after exercise and often with muscle pain if I tried to push through the fatigue, breathlessness, low blood pressure causing lightheadedness, breathless even on days when not in episode, syncope during my last episode just before 2 ablation, I was never sure if the meds - Flecainide & Bisoprolol or the episodes where the cause of some of the symptoms.

[CDreamer]

How did I deal with them? Learned to pace myself, very hard for me even now! I always thought it ironic that it needed my heart to let me know how important it is to do that. Adapt my lifestyle to one that works round the AF rather than expect to be able to just do everything I want to do, that is probably the hardest thing to do as used to sail dinghy & blue water, ski, dive, none of which I have been able to do for the past 2years.

[Hidden]

It has been a long journey to arrive at this point where I have almost no AF at all. 6 years ago I had very severe symptoms, faintness, dizziness, rapid heartbeat, nausea, weak knees, light headedness, sometimes migraine. I couldn't do much except lie on the sofa until the episode had passed. Even then it took several hours to get over it. I had to limit my lifestyle - cut down on activities to one shopping outing or coffee out per day. Also very unreliable because I couldn't guarantee to feel well enough to carry out something I had arranged to do.

I'm happy to tell you that after a pacemaker and 3 catheter ablations I am now almost as good as new. Still on Warfarin, Bisoprolol, Ramipril and Simvastatin, but no problems with these. I have had such wonderful care from Eastbourne DGH, and your chances of getting better must be equal to mine. Very good luck and stay well.

[keeponticking]

Constant palpations, breathlessness, lightheadedness, headaches, bloodshot eyes, zero energy, zero interest, no appetite, severe fluid retention, feeling like theres 2 birds trying to come out through my ears, angina and twisting, pinching pain in my chest - BUT - had a maze and 2 ablations and oh wow!!! time and patience and positive thinking and support and a brilliant EP! Do what you can and if you cant - sit down for 10 mins! it will get better honestly!! good luck to you!

[meadfoot]

Thank you all very much for sharing your experiences. You all sound to be dealing very well with the condition in of all the horrible feelings it brings. Good to know how other people cope. It can be a lonely condition and I value you all sharing your experiences. Thank you, best wishes and good health to you all.

Off to see EP Friday 14th, no idea what he will have to say - more meds, ablation, pace and ablate? ? It all depends on what my tests show.

Regards

Dee

[Rellim296]

Good luck - hope it will go well on Friday and you will move forwards!

Thank you for asking this interesting question - very informative to read the replies. A reminder to me that I am lucky to have few problems to deal with.

[Loquitir]

I kept putting my arrhythmia experience off for years before seeing a Dr because had a very busy professional life and thought having a fast heart rate was a part of that.

I then blacked out driving a car and had to goto hospital it which was the point I had realised that the host of symptoms such as shortness of breath, tiredness, leg pains etc were all inter-related.

7 ablations laters these symptoms are manageable now. Thanks to the EP.

[meadfoot]

Thank you for responding. A lousy condition for us to be dealing with but support from forum friends always helps. Be well. x

[jondeanp]

In one sense I feel quite lucky that my AF diagnosed in December does not cause me any really severe symptoms since being on beta blockers and warfarin ( currently waiting for 1st cardioversion). I do get however occasional pinching sensation in my chest which has been a bit concerning but after looking on this site it seems it may a symptom others have had. I mentioned it at my first visit to the AF clinic but i just got blank looks