Newly diagnosed

Hi

I have had this condition for 30 years and amazingly I am having the ablation on Monday 3rd Dec 07. I am anxious but as you say what is the alternative. My children and family get really frightened when I head off to A&E. Also if you ever have to have Adenosine to correct your heart rhythum you will understand why I am determined to overcome my anxieties and go for the ablation.

Stick to your conviction to get the SVT sorted out as your fears will always stay with you otherwise. I know I have tried to live with them for 30 years but really I have become more restrictive in what I do for fear that the SVT will start up.

Like you my heart rate ges up to 210 ish and has stayed at that rate for more than 5 hours at a time before I have had Adenosine in A&e to revert it.

About going to the loo - I haven't had the exact same experience but I understand that the condition is linked with adrenoline (the fight or flight hormone). One characteristic of an adrenaline rush is the sudden need for the loo and so this could explain your experience.

I will let you know how I get on at Papworth. Also I hope you do keep the site posted of how you get on as it is so encouraging for all of us to share - as you know.

Best wishes

Julie

Hi Julie,

I really hope your op went well and that you are now a new person. Please let us know how it went and what actually happened!

I had a great meeting with my Cardiologist in Bedford yesterday - he was really helpful and caring and I felt very much better after our discussion. He confirmed I had a benign SVT and did some blood tests to make sure I did not have a thyroid problem etc. We discussed ablation, but as I have only had one attack he felt we should wait as I may never have another. Also he felt from my ecg that the extra pathway might be near to the main pathway making it a little more complicated.

On that basis we agreed to leave it, but if it recurred and became a greater problem then we would do the operation. He was really good about it all and I feel greatly reassured. If i do have the op it will be at Papworth so I would be delighted to hear what it was like.

So fingers crossed for your op, fingers crossed I never get another attack and fingers crossed my anxiety subsides soon as my guts have been wretched since the event.

Cheers,

Alex

my three year old son is currently having tests to see if he has svt. he is wearing a mobile ecg which i have to press to record his episodes and has had it on for two weeks with one more week to go. ive been reading this websites posts for info and it is helpful but today i read someone had put benign svt which i hadnt heard of before. are there different types of svt? im a bit confused again now (it doesnt take much!) so if anyone can explain a bit more i would be grateful.

Hi there,

Sorry to hear about your son, I hope he is OK and they can catch his SVT on a trace. The consultant told me my type of SVT was benign and when I asked him what that meant he said that some could be more trouble than others (but generally in young people with healthy hearts they are OK regardless). Basically he said that though it is uncomfortable when it happens and may need to be stopped at A and E, it was not going to kill me.

I am no expert on all the different types of SVT out there, but I was relieved to hear that mine was something you could live with. Despite that, if it does recur signifcantly I will go for the ablation.

I hope your son is fully diagnosed soon and you get some peace of mind, I know how worrying it is. When you go back to your cardiologist make sure you write the questions you have down beforehand and go through each one in turn to cover all your concerns.

Cheers,

Alex

Hi Alex

I am back from Papworth and yesthey tried tod the ablation on me. To cu a long story short - I was concerned that my SVT would not be triggered off but the consultant told mer hewould try his best. Well it was very easy for them to trigger it as it happened. They did ablate some tissue but said that they were getting very close to the AV node (the hearts own pacemaker) and so they felt that they should stop incase it meant I had to have a pacemaker.

I was not completely dissapointed as I wouldn't relally want a pacemaker and I only have atacke rarely - sometimes only once per year. Also because my SVT has a fast (210) but regular rythum - it is not dangerous if stopped within a few hours. Therefore I am going bck as an outpatient to discuss option in 3 months. My options are: take fleccanide whn the attack starts and see it this stops it within a hour; or consider ablation with freezing which gives the consultants a few seconds to reverse the procedure should it be damaging healthy tissue. I will wait and see what happens but at present I am thinking I will tryhe grugs as they might work and I really don't wan a pacemaker unles the SVT gets worse.

Well I was terrified of going to Papworth. But I really want you to believe it was absolutely fine. The satff were wonderful they explain all that will happen to you and actually make you feel really special.

The procedure took about 1.5 hours and an Ias lying in a very technical laboratory - awake all the time. I felt nothing other than a bit of pressing as the catheters were passed in. Even when the SVT was triggered it wasn't scarry and they started it and stopped it really easily.

It was nice to meet other patients there and discuss our experiences.

Please don't worry. It sounds like we have similar conditions and I have ben told all along that it realy is not life threatening as long as it doesn't go on too long. It is just scarry. However if you have your coping strategy calear in your ead you will feel a lot better.

If you want more info just place another message and I will look out for it.

Best Wishes to you

Julie

Hi Julie,

Good to hear from and I am glad the ablation procedure was not too scary - fingers crossed they got enough of the pathway to stop it happening again or make it less recurrent. It is very reassuring to hear that the whole thing is quite straightforward and also that they were not willing to take a risk ablating too much material. My consultant thinks my pathway may be near to the AV node as well (from the ECG trace) though he cannot be certain, so it does sound like we are quite similar.

Hopefully the fleccanide will stop things for you if it does kick off again, at least you are no worse off than before and may be better off.

Let me know how things go and if I decide I need to do the procedure I will write on here for some more details if that is OK.

Cheers,

Alex

Hi Alex

Thanks for reply. I will post a message after next outpatient clinic in 3 months. I will post it as a reply to this message.

Best Wishes

Julie

thanks ever so much for replying about benign svt. my sons attacks do sound very much like what people describe on here but being only three its hard for him to explain what is happening to him. im only going by what i can see whilst he is having one and the fact that his heart feels like it is beating out of his chest while it is happening. he had his first attack at 17months old. his attacks only last about a minute but i can see from his face that they obviously vary in strength. he has had two in his sleep which was really scary. the most he has had is 9 in one day. sometimes he is sick when he has one i dont know if this is his bodies own way of dealing with tha attack as ive read on here that is what some people do to stop an attack. so far this year he has had nearly 100 attacks. sometimes towards the end of an attack he falls asleep and will sleep for several hours. im guessing the panic and stress of the attack make him worn out. i dont know exactly what his heart rate goes up to during an attack as we havnt had the results of the tests being done at the moment as he hasnt had a definate diagnosis. not in a horrible way but im hoping it is this as i know something can be done about it and that people get by with it without too many problems. otherwise its a case of what is it then and is it worse than svt. i think this site is great and i will let you know what happens when we go back to the hospital. thanks again.

Hi Alex & Julie

I have been diagnosed with svt for just over a week now & have found my emotions confused to say the least. I am now 43 & have kept myself fit up until the past few years,never aware of any symptons. For the past 16-18 months i have become breathless,anxious,tired & stressed,suffering from palpatations & aware of a greatly increased heart rate,normally waking me at night & lasting up to eight hours.My GP has always dismissed these episodes as panic attacks,but did refer me earlier this year.Up until last week i have never managed to record an episode,as per usual whenever i had a monitor or ecg everything was normal.Last week whilst undergoing an ultrasound at Addenbrookes Hosp.the palpitations started,the nurses response was Oh My God.

I am now on a low dosage of Beta Blockers to see how i get on ,with the options to increase the dosage or have the ablation at Papworth sometime in the future. I constantly have a sore/tight chest and still get chest pains & palpatations but to a lesser extent so i 'll have to wait and see what transpires.

I hope you both manage to get things sorted by whatever means & will follow your progress with interest.

Regards

Neil

Hi Neil,

Thanks for posting - sounds very similar to me - but i have only had one serious attack fortunately, unlike yourself and managed to get that recorded as well. I hope the beta blockers help, I am on a low dose as well for the time being as they are helping to calm me down, but I would like to try and get off them after Christmas sometime.

For me the worst thing was the worry and anxiety casued by the whole thing - getting used to the idea I might have another attack has taken me a few weeks and i am still a bit worried by it but re-assured that even if it happens it won't kill me.

Let me know what happens and if things improve, also, if you decide on an ablation let me know how it goes and i really hope your symptoms improve soon.

Cheers,

Alex

Hello again Alex

I agree with you, the anxiety really gets me down. Having such varied symptoms,which never seemed to show up when required made me feel like a fraud.After years of playing sport i knwew there was something wrong & began to think it was all in my head!

This site & people like yourself have really helped & sharing our experiences is certainly re-instating my sanity,i really thought i was going crazy.

If the symptoms persist i'll have no hesitation in the ablation.

Look after yourself it can only get better!

Regards

Neil

the good news is that after wearing the mobile ecg monitor for three weeks my three year old little boys heart rate is normal so no svt after all. the doctors havnt asked for any further tests to be done so it looks as if they could be some description of fit as we had discussed with great ormond street hospital earlier in the year. thanks for this site though it is a real life line when you need an ear to listen.

That is good news - I hope the docs at Great Ormond St can get to the bottom of things with your little boy soon. Have a happy New Year and God bless.

Alex

Hi Alex et al. I am soon to be 40 and was diagnosed with atrial fibrillation when i was 19. I was experiencing all the usual symtoms of what i now know as SVTC and would occur during playing squash and football. \" stop and quickly start\" would usually result in an attack- hart racing, sweating buckets, feeling dizzy and not being able to take another step. I would have to leave the pitch/ court and by trial and error found ways of bringing it all back down to normal. Holding my breath was the usual method. Also drinking alot of alcohol would result in my heart bouncing all over the place the next day and any exercise that day would bring it all on. This is still the case with alcohol and after all the xmas and new years excess i had an attack just stepping up my walking pace whilst going to the match yesterday! Anyway, 3 years ago i visited a heart specialist at my local hospital(after moving) and i no longer felt \" alone\". He was fantastic, recognised all my syptoms, immediate diagnosis of SVTC and i have had 2 abalation ops- my dodgy pathway is to near my AV node and he does not want to risk hitting that as it would mean a pacemaker apparently. The proceedure is nothing to worry about, painless and i found quite interesting to tell the truth! Geek huh! I have also found that not drinking coffee has helped to keep me ticker less likely to go into one. I have stopped playing team sports as it got embarrasing having to keep leaving the pitch and now stick to running. The only thing that does P*** me off is the sudden onset when i have not drunk any alcohol for several weeks( hav'nt had coffee for 9 months now) and i am in a 10 k race . I going along nicely and then ...You so and so heart of mine-- have to stop - race over! I trudge back feeling annoyed more than anything. I know in the grand scheme of things its not life threatening and there are people worse off etc etc but its an inconvience that always leaves me feeling inadequate. Sorry for my ramblings but i've never expressed any of this before to other SVTC'ers and its relieving!! Cheers Steve

Hey Steve,

It sounds like a nightmare mate - but a great excuse if you are not running too well! I still play cricket and on reflection have probably had a minor attack or two during games but such is the nature of cricket there is no problem taking it easy for a while..

Very interesting to hear about your ablation experiences - I am half tempted just to go and get it done as even though I rarely have problems and have only had one major attack, it is always in the back of my mind and it would be great not to think about it again. My Cardiologist reckons it is not sensible given my lack of major attacks as he thinks it might be close to my AV node after he looked at my ECG trace. I guess I will take a leaf out of your book (and lots of others on here) and just get on with things and see what happens. It is very encouraging to hear how people cope and manage their svt, I am almost looking forward to trying some of the tips people have passed on next time (though i would rather not have a next time!). I am off the booze, though once I get rid of a cold my kids kindly gave me I might start the odd glass of wine again as i just like it too much!

Anyway, good luck with the running and thanks for your comments / advice, it is much appreciated.

Alex