Follow up on bummed out

[paulh1]

My exercising is progressively getting worse. Can barely swim 6 laps in the pool. Went on a bike ride today . Had to quit when my heart rate went over 230. Rode back to the car real slow while the hr hovered around 150-170. Got home and used my Alivecor. Showed I had signs of Afib. Called the EP. Have an appointment this Friday. We are going to look for alternatives to the meds I'm on. I'm hoping to find some with less disruptive side effects. This is really starting to get me down now. Hate to be a whiner but this is one of the few places I can put this stuff out there and you understand:-((

[Rellim296]

Sorry to hear this but hope your EP will give you encouragement. Mine wrote out a list of methods of dealing AF and thanks to his input my life is now so much better.

[Jill13 in reply to Rellim296]

Sorry to butt in on this post but wondered what your EP gave you as a list of methods of dealing with AF Maybe helpful for others.

Please share.

Jill

[Rellim296 in reply to Jill13]

It goes:

1. Medication

2. Cardioversion

3. Ablation but may need more than one procedure

4. Surgery

5. Pacemaker + AV node ablation

He offered me a laser balloon ablation which I had just over a year ago. I haven't been totally AF free, but I am so better than I was and have given up flecainide. I am on his long list for another ablation.

[Jill13 in reply to Rellim296]

Thanks, helpful but I have only tried cardioversion and medication so far. Not sure if I want to go ablation and surgery yet.

[Rellim296 in reply to Jill13]

I know people are understandably reluctant to go down the ablation route, particularly those who have never had one. Personally I regret jogging along on 300mg flecainide per day for so long. I think I'd be better off now if I had been referred earlier to my EP.

[dedeottie in reply to Rellim296]

Me too. At the time I was so pleased to find a level of medication that knocked A.F. on the head. Think I would have made the effects last longer if I had taken less and reserved some to use as P.I.P. however my E.P. didn't agree so I felt I had to do as I was told ( and my family were encouraging me to as I was told) so for once I did! X

[pennytupence in reply to dedeottie]

Hi De thats exactly what I did but told my EP after the fact,I was expecting a telling off but he was great about it and said if I could manage on half the dose all the better and I do keep a pip.I've since had a lasor balloon ablation I'm 2 months down the line,still getting flutters every now and then but was told to expect that.I was really nervous about the ablation but had nothing to fear and would have it again in a nano second if I had to x

[Annaelizabeth in reply to pennytupence]

how did flecanaide affect you?

[dedeottie in reply to Annaelizabeth]

Flecanide did the job for me but at the higher dose of 300mg a day, I had visual disturbances so had to reduce by 50 mg and that wasn't always effective. That is why I was put forward for an ablation. X

[dedeottie in reply to pennytupence]

It sounds like we are both at similar stages penny as I had an R.F. ablation on 11 February. I am seeing my E.P. for follow up in 2 weeks time and expect to start coming off the medication then. I am already on a slightly reduced dose and no A.F. yet although my heart often feels like it is going to start. I was also terrified but it was nothing to worry about and would have a second if necessary.I will keep my fingers crossed for you as well. Let me know how you are doing. Where did you have yours done? X

[pennytupence in reply to dedeottie]

Hi Dee,I had mine on the 5th of march and seeing my EP on the 31st of July.The Flecainide hasn't really affected me but as I said I reduced the dose myself,and I was only on 100mg in the first place,I wanted to see what I could manage on and although I get the odd flutter and short irregular beats now and then I manage fine on half the dose.I had mine done at Blackpool Victory, where did you have yours done?.I hope everything goes well for you too,let us know how your follow up goes take care x

[dedeottie in reply to pennytupence]

I had mine done in Cardiff. Until recently I lived near Blackburn so would probably ended up at Blackpool too.x

[pennytupence in reply to dedeottie]

Yes you would have,I have nothing but praise for my EP Dr Scott Gall and all the staff in the cardiology department x

[Mike11 in reply to Jill13]

Having a cryro-ablation was the best move I ever made. Changed my life. But obviously it's a choice only you can make.

[Japaholic]

It may not help or be what you want to hear but a total of 4 cardiologists and 1 ep have told me the same thing. So long as you are anti coagulated AF isn't life threatening, it's simply a pain in the bum( or chest )

Your not alone, I'm in the exact same place you are, I muddle along, you'll find away too, we have to......

What's the alternative?

[Divegirl]

Feel your frustration Paul, I have gone from being The Bionic Woman to a woman exercising like I'm twice the age I am. I used to do high impact intensity driven regimes and now running late for meetings sends me into AFib. I haven't stopped exercise but have moderated it and have to be content with my 6 laps now instead of 60! Stay strong and good luck with the EP

[Hidden]

Best to get it sorted if it can be. I had nearly a year of not being able to do anything and I lost condition as a result. Eventually got to see my EP, he changed my drugs, now I can do anything again within reason, but still not back to where I was. Age kicking in as well to confuse the issue, but definitely not all age related. We had to try 4 different drugs to get a good result.

Hope you get a solution.

Koll

[paulh1 in reply to Hidden]

Thanks Koll, That's what I'm hoping will happen in this case

[wendicarro]

So sorry to hear that Paul, I agree with the guys above, have a word with your EP and arrhythmia nurse if you have one, this condition really sucks but we just have to pick ourselves up and adjust accordingly, You will get there and you are not alone, as you say this website is great for getting things off your chest.

Take care

Wendi x

[Dave1961]

From what I can remember you were quite active and exercised frequently so yes, this must be extremely difficult to come to terms with.

I remember when I wnet into AF 10 days into a residential bott camp which I was just loving and it took me maybe 12 months to really stop "if only-ing" in my head. It's a major adjustment that you can't just magically deal with on the spot.

I also have paroxysmal AF and TBH I thank my lucky stars that I am not like some of the other people here who have AF constantly and have to deal with it day or night - THAT would be hard. I'm worn out after a couple of hours in AF let alone that.

I assume exercise is a trigger for your AF - is an ablation in your future - it would almost seem to obvious?

[Mamamarilyn in reply to Dave1961]

Yes Dave I agree with what you say about having to live with AF every day....it must be wearing. However I, like you, have paroxysmal AF and Its really changed how I am because of the anxiety associated with it. I meditate regularly but still get anxious about making arrangements I'm not sure I'll be able to keep. Do you find this too"

[Dave1961 in reply to Mamamarilyn]

My triggers are energetic exercising, coffee, alcohol, being rundown/tired - that being said I can avoid all of these and still used to have random AF attacks..usually afternoon or evening BUT since January when I started on magnesium supplements have hardly had a problem, have halved my anti-arrhythmic medication, have been exercising more and even have the occasional coffee without any problem...

BUT I remember all too well waking up in the morning and just knowing within minutes that I would be in AF that day at some stage - I could somehow feel the precursors to it which then made planning anything seem ridiculous.

[weezergeezer]

If or when youre in Af, its not advisable to do exercise, 200+ is in the death zone IMO rest up and be kind to yourself, get your heart rate below 100bmp, even if its means going to bed all day and staying there,

save your exercise for another day when your not in Af...don't be come a self inflicted casualty ? its certainly not worth dying for !

Af probably wont kill you but a blood clot will.

if you have paroxysmal Af, it will go away when it decides to, with or without any meds,thats been my experience. thankfully I've have an ablation

[paulh1 in reply to weezergeezer]

My Afib is exercised induced. The odd thing is that I can walk for miles and have no apparent problem but swimming or biking is a different story. The Afib happens at the beginning of the routine. If I get by the initial stage I am usually ok. It's starting off where the issue is for me.

[meadfoot]

So sorry to hear you are having problems. Heres hoping the EP gives you some good advice and help when you see him. Having to modify your exercise routine is tough and I fully understand the shock, frustration and anxiety this condition brings with it.

You are in good AF company here but not company you would choose, none of us would. We would all prefer to be back to our original selves but we are here for each other ongoing so never feel alone we all understand what you are going through.

Cyber hugs coming your way.

Dee

[Buffafly]

I'd like to swap bodies but there is no way you would agree to it - I can only swim one length! (Backstroke)

[PeterWh]

Paul - very sorry to hear about your bad news but don't be despondent. Hopefully some of the regulars won't mind me saying some things that are in other posts as Paul may not have seen them. By the way I am in Persistent AF.

When my father was diagnosed with bowel cancer he was given 1 year to live (not that he told us at the time) but lived 6 years. He said "life is changed not ended"!!! Very true for us AFibbers but a sure death sentence for him!!!

At 33 I had a bad car smash (other drivers 100% at fault) which put pay to all my sporting activities. At that time I played squash (at least twice a week), indoor hockey and field hockey. That was a blow but I had to be positive and get my head around it. I suspect that now 27 years on with greater knowledge and equipment this would not be the case now. But c'est la vie - we are all where we are at and in most cases we can't turn back the magical clock and undo things!!!

It is true that AF in itself won't kill you but left unregulated and uncontrolled it will trigger or lead to other things that could kill you and that is not just strokes. Also the more AF is triggered the more paths that it opens up (finds) and makes the AF worse. I am now sure that I have had AF for some years but because I did not get bad attacks (and was able to explain away some of the symptoms that I now know are AF ones). However I was gradually getting "run down" and when AF was actually diagnosed I was in persistent AF. Had an ablation but was back in persistent AF in less than 72 hours.

I have read in a few places that heart rate should be a max of 200 minus your age. Also resting should be in the range of 60 to 100. However I am not medically qualified and for some these may not apply to you / everyone. In the early stage of my AF journey my GP said that if procedure(s) could be done so that taking drugs permanently was avoided then that was a good route. AF will progress. In my case taken off rhythm control drugs after failed cardioversion last year and I was told that the only realistic option was an ablation. My current HB is mainly in the 90s and sometimes creeping into low 100s but my EP says that it is too fast and has increased Bisoprolol by 1.25mg. I was in low 60s following ablation whilst I was in NSR.

I have also read that the chances of success of ablations is significantly higher for those with paroxysmal AF then when someone progresses to persistent AF.

There are many triggers / exacerbators for AF (some above) but a very key one is adrenaline. In my case I am sure that adrenaline was and I know is the main trigger since I only partially ticked some of the other boxes. This was due to work and lifestyle adrenaline rushes (always rushing around and meeting challenging deadlines).

My view is in the short to medium term take things a bit easier (no matter how hard) and get things more on an even keel. It is just not worth the risk. I know it is hard - it has been for me, particularly over the last 8 months. I also have heart valve problem. Chin up!!!

[PeterWh in reply to PeterWh]

Also when I initially saw my EP last September he was surprised that I could walk 2 to 3 miles (admittedly not at a brisk pace) but by the time I came to my ablation at the end of March I certainly was not in a state to do a mile even slowly.

[Hidden in reply to PeterWh]

PeterWh,

You have given out some very good advice there...

I would tell anyone who has PAF and are offered an Ablation to grab it with both hands...The longer you put it off the more your body suffers the affect of the medication and the over taxing on the heart muscle...

Carol.

[PeterWh in reply to Hidden]

Yes I would also encourage anyone to have a ablation. If it wasn't offered to me I would push for it.

My EP consultant told me before Christmas that he didn't think that in my case there was any chance that it would work first time and that it was quite possible that I would need 3 ablations. So be it.

Paul I can tell you that even though I was only in NSR for 71 hours It felt really amazing but I totally resisted to do anything - I was told only the phone, TV remote control and the iPad were allowed.