Just wondering how many people have more than one arrhythmia and if they find any easier to deal with than the others?
I have had SVT, atrial fibrillation and most recently atrial flutter all paroxysmal and have to say that the atrial flutter was the worst experience I’ve ever had! Although I hate all of them 🥴 that one is my nemesis! The trainee cardiologist said I would not be able to tell the difference but it felt like a completely different condition to me!
Atrial tachycardia is pretty nasty. I think they are all upsetting till they become familiar and you realise you are not going to expire imminently .
Thankfully I have no experience of atrial tachycardia. I think you may be right, when I think back I hated each one equally in the beginning
I was first diagnosed with SVT, then Multifocal Atrial Tachycardia, then Atrial Flutter then Atrial Fibrillation. I’ve had a cardioversion for Flutter, 2 ablations for SVT, an ablation for flutter and an ablation for AFib. Looks like I’ll be heading back into the cath lab soon for another ablation (hopefully my last). I’m 54 and frustrated with what these arrhythmias are doing to my life but I try to keep smiling😎
Wow, do you mind if I ask how long since your first diagnosis? Sounds like you have been through some real challenges to get rid of the problems with your heart! I wish I could say I’m as brave as you sound but I just feel petrified by it all.
Hi Kelly
I was first diagnosed with SVT nearly 3 years ago after ankle reconstruction surgery. Doctors said the stress of the injury and operation could have triggered that. Had ablation in January 2017 for SVT which was unsuccessful so had another one in June 2017 which was when they discovered it was Multifocal so the plan was to continue managing things with drugs then in April 2018 I went into atrial flutter after quite a stressful period (including a new job and the death of our 17yo dog which hit my daughter with autism very hard). I had a cardioversion and a few days later was diagnosed with Shingles. I had 4 weeks off work then got back to work for 6 weeks then “bang” - back into flutter which then morphed into atrial fibrillation. I was taken by ambulance to hospital and the next day my EP said I’d need to stop work for a while so we could get these aggressive arrhythmias under control. I’ve been off work ever since. I went for an ablation in early August which was abandoned they found a blood clot, then went back in September for the AFib and flutter ablation. Two weeks later I was readmitted to hospital for 3 days with fast AF and subsequently developed pericarditis and inflammation in my esophagus. I’ve had lots of drug changes but nothing is controlling things fully and I have AFib episodes everyday so it looks like I’m heading for another ablation. I’m helping myself as best I can - I’ve lost weight, I’m eating super healthy, I’ve cut out alcohol and caffeine, exercising, meditating, doing breathing exercises, sleeping well, relaxing. I’m not sure what else I can do. My life is on hold and it’s frustrating but then I figure there are a lot of people worse off than me so I’m pretty philosophical about things. Don’t get me wrong, there have been plenty of tears but I just pick myself up and keep going. Every day is a day closer to feeling good again.
Karen x
Thank you so much for sharing all that you have been through and are still facing Karen, I’m absolutely stunned at how much you have overcome and how positive you are. You have made me feel like I need to get my big girl pants on and start coping with all this and stop being so scared because like you say it could be so much worse.
Thank you again, I am hoping so much that you feel better each day and good health is just around the corner. Xx
Thanks Kelly. I’ll get there and I know you will too. Basically there’s two options- get on with things or fall in a big heap. 😃😉
I’m ashamed to say I have been in a big heap but all the stories and warm welcomes I have had here today have made me see things a bit differently. ❤️
It’s perfectly understandable to fall apart on diagnosis. I’m sure we’ve all been through that. Now with the friendship, understanding and support of this forum it’s onwards and upwards. We need to live life as best we can x
Thank you so much xx
Have you tried taking magnesium?
Me? Recent blood tests showed my magnesium levels are very good. I eat heaps of magnesium rich foods. I’ve spoken to my GP and pharmacist about it but they want my EP to okay it first so it’s on my list for the next visit.
Only 1% of our magnesium is in the blood, so we would need to be very short for this to show up on a standard blood test. You could try one tablet a day, with food (magnesium taurate or glycinate is recommended) for at least three months, and see if it helped, but not if you have issues with your kidneys. If it is helpful you could then consider increasing the amount.
Rmember that many EPs will be simply dismissive as they are not trained in the use of vitamins, minerals etc, so don't be put off by a negative attitude. See Dr Sanjay Gupta from York (via internet) for a much more positive and helpful approach.
I have AF, SVT and very occasional AFlutter. I find an irregular heartbeat much more difficult to cope with than a regular beat.
My runs of SVT have always been around 120 to 160 and I could walk around (slowly and carefully). The same speeds of irregular beat floored me - I couldn’t breathe.
Since starting Flecainide, I have had no AF in nearly. 5 years but have short runs of AFlutter very occasionally - controlled by Nebivolol at about 110 to 130.
Aaah - posted too soon. I’m not sure I agree with your trainee cardiologist. We become very adept at recognising our heart’s gymnastics, so I would be inclined to agree with you. I can tell the difference between a PAC and a PVC by the feel and effect of them. My cardiologist agreed.
It’s funny how our bodies respond so differently to the same thing isn’t it, my SVT and AFIB rates are quite high and the flutter not so but I can’t function at all with any of them.
Meant to say I’m pleased that your AF is controlled by flecainide 😊
Than you - me too - it has really been a friend, even though I was nervous about it at the beginning. Dr Gupta’s video on Flecainide posted by Steve112 would have been very useful back then. Are you currently taking any drugs?
Yes I’m taking flecainide 50mg twice a day. It used to be really good and offered me years of help but things seem to be changing and my heart is just racing for no reason at all and I’m having a lot more afib etc. I also was recently started on omeprazole for extreme bloating and belching that goes in for hours and hours and also causes racing heart while it’s happening.
I was very insistent that it was a completely different experience and I could most definitely tell the difference, not sure he was convinced though!
How would he be sure unless he was an arrhythmia patient himself? The cardiologist who agreed with me about different ectopics had had AF and associated problems for 25 years.
It’s strange isn’t it, maybe that’s what it said in his text book 😊 a cardiologist with AF sounds like a much more understanding combination!
I went ten years basically free of AF after my last ablation in 2008 although had two episodes of A tach in the early days. Had another in 2017 and another end of 2018 all of which needed medical intervention so now waiting for a fourth ablation to get rid of the atrial tachy. Life goes on! Remember to live every day as if it is your last as one day you will be right!
I will try to keep that in mind, thank you 😊
AF, AFl, Tachycardia & Ectopics and I completely agree - AFl made me feel the WORST!
It felt like my heart was two organs instead of one! 😳 the top part felt like it was trying to wriggle out of my throat and the bottom part felt like someone was playing a drum inside my chest! Talking was a real issue, it felt awful trying to speak. Just horrible!
That trainee cardiologist has a lot to learn! It is absolutely possible to tell the difference if you are symptomatic and you’ve had a good amount of arhythmmias. When I am being monitored I can accurately predict the PVCs or PACs a second or two before they show on the trace. I’ve had AF, SVT and AFl. The one I am least able to put up with is AFl. It’s just so relentless.
I agree! The atrial flutter felt like me and my heart stuck in a really bad place.
I have afib and aflutter, aflutter does not respond to medication
Seems like if you have one you are very likely to have others. You think one would be enough to cope with!
I had only afib but after the second ablation I developed aflutter, the EP told me it is from the scars
Oh no, will you be able to have another ablation to get rid of the atrial flutter? Does it make you feel really poorly?
The good news is that the AFl is easier to Ablate.
I may have another One, but lately the episodes are not daily, so We are waiting to see, Aflutter does not make me feel bad because heart rate is not very high, although EP told me that ventricular heart rate is much higher that what the pulse or Omron tells, before my last ablation I Was on aflutter almost permanently , now It is much better, but except that going upstairs or uphill Was exhausting, I led a normal life.
I suppose if it doesn’t make you feel too bad then that’s a good thing and maybe best to let sleeping dogs lie??
Yes, I am in an wait and see attitude, but not completly relaxed as to the future of my health
I had flutter...but not had an episode of that for over a year,thankfully as it was vile!
Now just AF,85% asymptomatic.Think they can all affect people in different ways though,,xx
Kellyjelly, Good Day. My first question where are you located. If you are in USA then i really recommend contacting absolutely the best doctor ( probably in the world). His name is Andrea Natale and he works in Austin Texas cardiac arrhythmia St Davis Medical center. He is the procedure pioneer and virtually all the difficult cases go to him. He is up to date performed 13000+ procedures and more than 70% of which are difficult cases. I know people who had 4 -5 unsuccessful ablations before the "master" worked on them. All the issues you mentioned he would address in a single procedure. My trouble with Afib began at 27 y/o. I had Ablation at 37 by Natale which held for 10 years. unfortunately some tissues "reconnected" and i had "touch" up by him in August 2018 which went very well. In fact i am flying to Texas today for follow up. In between those two ablations i had no issues with Afib except brief periods of frequent PAC. I highly recommend contacting this doctor he might get your life back for you.
Thank you so much for your lovely helpful reply. I’m in the uk and I have now had my ablation, the EP said it was very successful. I had it 9 weeks ago and I found recovery quite challenging but I am feeling so much better.
I hope your follow up goes well, your doctor sounds absolutely amazing.
Take good care 😊😊
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