I'd like to give 2 updates to my recent posts whereby i felt people were " poo-pooing" me on this site.
First of all when I originally joined i mentioned that i was booked in for EP tests and queried wether, if any thing was found, I would be ablated there and then as it would seem to make sense whilst catheter line was in . I was told no and very much doubt it and lots of other negative responses ....... Well happy to tell you all that you were WRONG Those EP Studies happend today and because the rythm fault was found, an ablation DID indeed take place.
Secondly, i was very concerned and anxious last week about having to come off betablockers without weaning off them first. This was in advance of my procedure.My worries related to when i once missed a tablet and the effect it had on me and i posted about this.
Again, i was made to feel like i was in the wrong and over reacting.
Well i was actually very ill with coming off the tablets and my heart rate DID go through the roof as predicted, so much so that i blacked out.
I know a lot of you are very long in the tooth with all of this and have had the condition for years, whilst i do think your experience and knowledge is invaluable i also think
You need to remember what it was like for you all when you were first diagnosed - how worrying and anxious it all is, its a minefield and a lot to get your head round.
I haven't bothered posting since my last put down, I probably won't again, i will look for another site where im not made to feel belittled.
Please remember, not everyone has your knowledge- some of us have been very afraid of this new condition.
I have just read your posts re your EP study and coming off beta blockers. I had never heard of an EP study and I suspect that nobody else had either. We had all had pre-ops and then scheduled ablations. I consider that you had very fair responses to your questions and that your criticisms are unfair and unjustified.
Every single person who has had atrial fibrillation is fully aware that it can be totally debilitating, life changing and ghastly. We do however try to cope as best we can, accepting our lot.
I've had an ep study.my cardiologist thought I had an svt soo I had the ep study,and he said if it is svt he would do the ablation there and then.It turned out to be afib,an ep study is helpful to the doctor as he can see where the bad boy electrics are misfiring. As for your other comments I have to say(even though I'm a newbie) that all the posts I've read on here always seem to be helpful and kind.And I personally think there's a wealth of knowledge to be found here,just my opinion, of course.
You're absolutely right about how helpful this site is to us all. When I checked back on this person's responses I could not find anything other than genuine help. I was not involved so I thought that it would be helpful if I defended their posts.
I think that the term "EP study" means different things to different people. We had not seen it used on this site before. We've all learned about it since, so that's useful.
Hi. I am glad your E.P. study went well and you were able to have ablation at the same time. Not everyone is that lucky. As I wasn't involved in either of the discussions you mention I have just read them and must admit to being surprised at your reaction as the comments from folk read in a helpful and informative way. Also you appeared to be happy with the suggestions and grateful at the time.
No one can give you definitive answers to questions as our conditions all vary and different E.P.s have their own ideas and preferences so often our experiences of a procedure differ.
I am sorry you feel so bad but feel you are being unfair .
I will always be grateful for the amazing support of the people on this forum. X
OK Lets all take a deep breath here and count to ten before slanging everybody off shall we. I do feel that you may be overreacting here as we are all here to support each other and I am can't see that anybody deliberately put you down. I suspect that regarding coming off the drugs, nobody put anything negative because they didn't want to scare you any more that you already were. I know my advice is always to think positively and not look for negative things because I firmly believe that we attract these negative things if we think too much about them. Regarding the EP study well it is unusual to have such on its own as far as my knowledge goes. It is normally the first part of an ablation whilst they work out where things are firing off so I expect that you saying you were going just for that threw a few people.
I have been around AF for ten years now and even though I don't have it any more I stay here because I know too well how scared I was back then. There was nothing like this forum and no AF Association and very little info out there which is I why I was one of the first members of AF A. I swore then that I would do anything I could to stop others feeling as I did back along. None of us are perfect but we try.
Bob, I do so agree with you. I haven't managed to get ALL the answers through this forum, but I have had such warm-hearted support always that it has made a lot of positive difference to me. I haven't made any comments here for some time because, like yourself, things are under control, but I would most certainly be back with a post should things go either amazingly right or unfortunately wrong! Thank you for your support and shared wisdom!
It's good to hear you had your ablation today and I hope all goes well in the future. however I don't understand what you are trying to achieve with your post. Everyone on here is a volunteer and offer free advice, and comfort, to people who are both old and new to this condition based on personal experiences. But that's what it's based on ,experience, I don't think anyone on here is a qualified a Cardiologist or EP, it's just a bunch of random people whose sole purpose is to try and help and reassure people on their AF journey.
Hope you are feeling better now- seems to have been a misunderstandng and this can happen when things are in writing and also when people are stressed and worried.
People's intentions are good! Suggest you keep posting as you will be able to help others from your recent experiences
They do an EP study when they are not sure what is going on in the heart. Going in from the groin , they put in a catheter and stimulate the heart in order to highlight the problem area . As they are already in there and if it is a small job to repair, then they may elect to do it there and then.
I went in for an EP study to locate the origin of a problem and when stimulated the problem became apparent , as i was under a local the consultant discussed it with me and explained that they had found a leak by the av node, AVNRT, and that they could ablate it there and then. The study in my case was in the right side of the heart , so they did not have to cross the septum, as such it was a fast and fairly simple procedure, compared to other investigative works.
A chap in the bed opposite also had it done there and then, when the EP investigation found a birth defect.
sounds like what I had done in 1990. Wires in through groin and then they started my heart going faster and slowed it down again till they found the problem. No idea it was called an EP study though.
I was going to respond, but I dont think I will bother as the original poster has left the forum and wont read what I have to say. HOWEVER, I will say I am grateful to everyone here and for your input and advice whether I agree with it or not.
You can't please everyone in this life we have. I have read all of the previous posts and the one today and I feel so sorry if that is how he feels. His experiences could have helped others but I'm afraid he may be alone now if things don't go too well in the future. What a shame. Japaholic sums it up - biggest group hug all around as this site is amazing -especially at 3am when things are thumping and you feel alone and frightened.
Dear Hidden - I can't seem to read your original post, so all I can remember is that if your talked about EP tests, I would have assumed you meant all the preliminary stuff they do - echo's Holter monitors etc. and not the actual EP study which they do before the actual ablation while you're sedated. I'm sorry if you have felt belittled by this forum. I'm sure that no-one would have wished that. I can't comment on the drugs because all I have ever taken is an anticoagulant (and I can wax lyrical about those!).
Anyway, I really hope that your ablation was a success and I wish you well in your on-going recovery.
Purely for those reading this, when I was first diagnosed back in 2004/5 my GP who's mother had just been through it all mentioned that I would have to have an EPs study and was then surprised when I had my ablation. It would appear therefore that maybe years ago doing an EP study like flyfisher mentioned was more common. I would also surmise that if the problem was in the right atrium (flutter not fibrillation) then it would be appropriate to ablate there and then. Flutter ablations are performed in many more centres than pulmonary vein isolation procedures (AF ablation) as they are much more simple and do not require a transeptual puncture. I understand that typically a flutter ablation may take as little as an hour whilst PVI normally takes abut four. In this I do not include Prof Schilling and his high speed systems. LOL
Above all we must accept that AF s not a one size fits all condition. Aussie John years ago referred to is as a mongrel condition which sums it up very well. We all experience it in our individual ways and as we all also have different levels of tolerance to pain and panic we can never as the Chinese might say "walk in mile in the other person's shoes. "
I am still confused, so are we saying that an EP study not always done prior to an ablation.
Again never mentioned to me and its requirements, I was under the impression that is was all part of the ablation that the EP would be able to see which area to ablate.
I would assume that most cases of a fib can be diagnosed from non invasive tests and an ecg .
In cases where the ecg does not clearly point to the type of arrhythmia, then the electrophysiologist may choose to do a catheter based EP investigation in order to pinpoint the source of the problem.
In my case of avnrt, the problem would only manifest itself when stimulated.
Hi mick my understanding is because of my type of AF and the area that needs ablating ,my heart needs to be in sinus rhythm during the ablation so no studies needed my EP told me this and also googled it to check as was a bit confused .He was right!
Dear BobD and other respondents, very sad that Hidden had a negative experience of this site and hope they make a good recovery. I would just like to thank everyone for their support, sharing their experiences and helping me as I continue to try and adjust to living with AF. For me, everyone has been amazing and I am not sure how I would have coped without the information and feedback I have received, as well reading and learning from other posts on the site. A big thank you.
I totally agree, I would be struggling with worry if it weren't for this forum. Although I must admit I do feel a bit of a fraud as I have only had one AF event which put me in hospital for 3 days. Thanks once again to all of you lovely people. xx
Don't feel a fraud. I am in persistent AF but fortunately have not had to be hospitalised (although it was very close on one occasion at doctor's surgery).
I agree. When I found this site I was so grateful, so thankful that there were people, some who had left AF behind some years ago, but who were still kind enough to help us new ones wherever they could. Collectively this forum is incredibly caring, positive and a fount of knowledge, with humour. I'm sorry you can't see it, but wish you well. PS. Have had an ablation and waiting for another. Never heard of an EP study.
I can't see the original posts, I've no idea if I commented but I can't imagine anyone was intentionally negative. I'd never heard of an EP study - nobody's mentioned an ablation to me so I try to steer clear of discussing them as I know nowt. But this forum has always been full of supportive, lovely friendly people and I'd like to hug you all. I suspect that the poster read things into responses that weren't intended, which is a shame. For my part, I think everyone is great and would like to say thank you for being here and for helping.
There weren't any negative responses at all. Like others who have responded here I wasn't involved in the original posts. I checked and discovered that all the responses were helpful and kind. I honestly couldn't understand where he/she was coming from and I thought the post was very unfair to the respondents who had been trying their best. There's no pleasing some people!
Personally I can only thank those on here who have given me inspiration, information, tips, thoughts and support. I also feel that it is good to share experiences all round.
I had never heard of AF until diagnosed with it last September (though in retrospect had it for some time) and then when I saw my Consultant EP he directed me to the AFA site. However I did not notice the blogs / posts forum until 29 Jan when I wanted to look up something on the AFA site for my (further) consultation the next day. It then was a few weeks of reading before I made any comments.
I truly wish that I had seen the posts in September. It would have helped me no end to come to grips with AF (better and sooner). In any event I feel that it is unwise to make a snap judgement on one or two blogs and a few responses. If they didn't agree then say so. We are all different and all have different symptoms and AF affects us differently.
I would like to reiterate PeterWh's thanks. This site has been one great big comfort blanket for me and I would like to thank each and every individual who has contributed.
Here here, likewise if I would of been informed of this forum last year when first diagnosed I am convinced my symptons would not of gotten anywhere near as out of control as they did pre and post Xmas.
Thanks to each and everyone who have offered both support and advice over the last few months.
Rgds
Mick
I am sorry you found the members of the forum not to your liking. If you've had a cure i am happy for that too. However we can only be truthful in our experiences when you asked we kindly replied . I hope your journey goes smoothly sorry but most of us it takes time to have our problems addressed in a way that makes us able to live life with the condition. Many people have found the site helps with anxieties and fears.
you can't please everybody and its so easy to mishear a message when you are anxious. I would like to say, I was scared when I was diagnosed and did not have much information from the hospital. I stumbled here after doing an internet search and have been very grateful to read the posts and have found them very helpful to me. I know I rarely post but I do thank everybody for sharing their experiences.
Just to let you know I vist some other sites on health unlocked and Hidden has just signed off one of them. saying (he was done with it because of all the negativity) so it seems its not just the AF association site he's not happy with.
This site brings us all together to share our knowledge and experience. It is a wealth of information and most importantly it lets us know we are not alone.
It's certainly a great comfort to me. Long may it last.
I don't comment on here very often but do read post regularly.
I would just like to say I am also very grateful to the members here who offer support - even if I don't always agree with everything written. When I first got AF some 20 years ago you really felt you were on your own and nobody understood.
I think the original poster is unfair and unreasonable.
Really pleased your EP study went well and I remember posting in response at the time that I was about to undergo the same thing and it was my understanding that they would ablate whilst in there if they found anything at that point. I was accurate about that but unfortunately for me they could not initiate anything in my EP study so the ablation part did not happen.
I was gutted as it had been my great hope giving a 95% chance of a cure for the SVT. I am pleased it worked for you and wish you well. It must be wonderful to be able to move forward positively from the EP study and ablation. Sadly for me its back to the drawing board.
On the beta blocker front I personally did not have an issue but then they could not start the arrhythmia during my EP study and that is possibly where your and my experience also differs. I was terrified I would experience the same as you.
So pleased it is all behind you now just wish I was in the same position. Its back to the drawing board for me with little hope of a solution coming my way. Be well.
I too am so thankful to have found this forum. It has been the scariest thing that I have ever been through. I actually thought at first that my quality of life would never be good. It has helped so much to read all the ways that you have coped. I am much better now but if I need you i know I can count on you!
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Ablation on Monday!
Cryoablation tomorrow 
2nd Ablation 
Coming off low dose bisoprolol
