Hormonal / Diet Trigger

Hi

I am 44 and have had SVT for 30 years. I write alot on this site but mainly to just ask questions. I have had ablation (last week) but it was unsuccesful as the troublesome short circuit was too close to the AV node.

I have been prescribed flecainide to take 50mg twice a day if I feel flutters, and a 100mg dose when attacks are more prolonged. If this fails then off to A&E.

I am very interested in your message as I am trying to find reasons or patterns into the outbreaks, and any measures I can take to control it.

I have found out by looking on the internet that SVT is more common in women. And personally my first attack was at the age of 13 which would tie in with your puberty theory. I have never mapped the attacks and dates and tied this to the menstrual cycle and pregnancy.

I had two attacks when pregnant with my second child (in the same day) and then nothing for 5 years. I always wonder if it is realted to stress. However I find it hard to relate each of my episodes to stresful times although sometimes this has been the case.

Where did you get the idea of th fat free diet and did it really work. My weight has gradually increased as I have got older but I am not over weight even now. When I was slimmer I have still had attacks of SVT.

Have you ever tried flecainide? If so did it work for you? Does your current medication work and what is your experience of it?

It sounds like you have good control over your SVT with the valsalva maneuver. I have never had mush success with it and wondered if you cold explain to me what you actually do?

How bad is your SVT? I don't blackout, my pulse reaches 210 and I am unable to stop it. Like I said I could have two attacks a day or one in 5 years!!

I value any infomration you can share.

Best wishes

Julie

Hi Julie - sorry I don't wish to hijack this thread at all, but I was wondering if you could explain how you have managed to cope with SVT for 30 years. You seem to be quite well-adjusted to it whereas I am still very anxious. Do you have a certain way of looking at things? do you forget about it if it does not occur for a few months? I would love to know how you manage your emotions and get on with things - sorry if that is a bit personal.

In relation to what you mentioned about stress, I think it must be linked somehow. The only serious attack I have had came shortly after my Father died and in the midst of a very busy time at work - I just don't think it can be coincidence. Interestingly, before this period of palpitations and missed beats, I previously had some issues when I was a bit larger than now. I lost 2.5 stone over 6 months and found my missed beats etc dissapeared completely. Not sure I can afford to lose another 2 stone to stop them again though!

Thanks,

Alex

Hi Alex

How do I manage to live with SVT is a good question that no one has asked me before.

I have given it some thought and I suppose my thinking is linked to how it all started.

My first attack happened when I was 13 and came on after I ran a relay race at a new secondary school. I didn't even know what was happening but was aware of the fluttering in my chest that went on for several hours. Ever after that I could feel the svt attacks but my parents never really believed / accepted there was anything wrong with me. Therefore I kind of convinced myself that I couldn't be ill - it must just be a sort of normal thing - although I was frightened.

This went on for years. Then as I reached my twenties I wanted to travel the world etc. and just thought - bugger it - if there is somehing wrong with me so be it I am not going to let it ruin my life. I'd rather die having a good time than sitting around being miserable.

Once I had children I was more concerned because they worry about me going to hospital. I try and explain to them that I am just going to get special medicine. I force myself to belive the Drs that this is not a life threatening condition. But to be honest you only have one life and you have to live with what you have been dealt - it could be a lot worse.

I know that I always have a fear at the back of my mind about the SVT starting and how will I cope - where will I be. But I tell myself - come on, it might not happen again for a year and even if it does I'll just have to get to A&E. So better to just get on and do what you want cos you could be hit by a bus tomorrow.

I don't know about your diagnosis - but if you are like me you have got to remember that this is not life threatening and you can get treatment once it comes on. So carry your mobile phone, have the A&E number programmed in so that you can phone ahead that you are coming. Have a strategy in your head as to what you will do once it comes on.

I take my medication, wait 30 mins. Phone ahead to A&E to tell them I'm coming. Phone someone to look after ny kids. arrange a lift or ambulance (if I have to). Get the adenosine and then 2 hours latter I'm home.

I keep thinking of all the things that the cardiologists have told me and try to reassure myself.

I can understand your shock. I think people who have SVT have (in their own minds) faced death - and sometimes have done so many times. That is probably why you are scarred - I know it does me. But this is only in your mind - you are actually no more at risk than most people and probably at a lot lower risk than many.

I hope some of this helps - its a bit rambling.

I am happy to answer any questions as I know this site has really helped me - both in asking my own questions, reading what others say and answering questions as it makes me think.

Be strong

Julie

Hi Julie,

Thanks for your thoughtful and considered response, not at all rambling! Everything you say makes a lot of sense - I have been diagnosed with AV node reentry tachycardia (well, as certain as my cariologist could be without an EP study), so it is pretty benign and according to him, not life threatening - but that does not stop it feeling that way when it goes off. So far my attacks have either stopped themselves or via valsalva (blowing, deep breathing and neck massage) so no adenosine injections fortunately. Therefore it is pretty mild compared to what you have and what many others have. As you say, it could be far worse and many people deal with things that make this look like nothing. I keep telling myself this and (as you do) repeating the consultants assurances to myself.

I guess I need to work on developing your positive attitude and get on with things. As you say, if the worst comes to the worst it is only a trip back to A and E. Your experience and thoughts have been very helpful indeed, thank you for sharing them. I think you are right about the issue of facing death - the trip into A and E with the lights flashing makes you think of lots of things and though, as you say, the reality is my heart is healthy and strong, just the experience is sobering and remains in the back of my mind.

Good advice about the phone, plans and handy numbers etc. I too have young kids and my main worry is scaring them if I have an attack whilst I am with them so being organised ahead of time makes a lot of sense.

My consultant does not want me on any medication and prefers the ablation as the first line of treatment if the svt gets to be too much of a nuisance.

I hope you remain positive and thanks again for an extremely helpful response.

Alex

Hi Julie...Sorry I have not replied at all. I was not at all well just after posting the experience I was having aprox. 5 episodes a day for a week and in between that I was experiencing ectopics (flutters) every min. I ended up in A+E Just before xmas where they gave me two lots of 12 mls Adenosine. After visiting the Doc he put me on 120ml of Verapamil daily but that had to be increased to 240ml a day after a month as I still kept getting them really bad. I have been on the 240ml for almost 2 months now and they have stopped them completly. The most I experience at the mo is the odd flutter if I am under stress. I am concerened about long term side effects.

I have been offered an ablation but I admit this scares me. What was your experience of the procedure? I understand you are awake throughout the procedure.

You asked about the diet side of my experience. My weight has incresed over the years only by about a stone and a half. Its just that when I follow a low fat diet and get close to my old weight they seemed in the past to stop. Dont know if this was a coincidence though. With the valsalva manouvre I blow only through my mouth on to the tip of say a pen or the end of my thumb with pressure, for one deep breath. I repeat this as long as I can without making myself dizzy. It does seem to also help if you can be alone and lying down so that you can focus on just your breathing. Not like on the occasion I was with the first aider and my son at a busy supermarket and then they had a fire alarm and we all had to get out. I did not stand a chance of focusing on my breathing and after 2 hours I was taken to A+E.

I am now considering the ablation v. seriously hence I am back on this web site.