SVT Questions - No known cause.

[djb85]

I have been an SVT sufferer since the age of 16 (Now 28).

I have around 3 or so episodes a year and my heart rate increases to around 260 BPM. Adenosine will then be used to bring it under control, but then I spend a few days stuck in AFib until Flecainide is used.

I now take 200mg of Flecainide a day and have been for around a year. They attempted to ablate and I spent a few hours having an electrophysiology study.

The verdict is there is nothing structurally wrong with my heart and therefor nothing that can be done. As the rate is so rapid, I have been advised to stick with the Flecainide for life. I have begun a fitness regime as I have been pretty idle.

I guess my question is, if I have no heart issues, perfectly normal echo's, ecgs, stress tests, etc. What else could be the cause, and will this likely be with me until the end of my days? It has had a profound effect on my life, mainly causing anxiety that my heart will just stop.

Thanks in advance.

[MichelleP_3811]

I am so sorry to hear about your troubles.  Long QT is the one condition that does make the ectopics dangerous.  Though it is not that common which is good for most it is really unfortunate you weren't so lucky.  I wish you much success with the pacemaker and do hope that you never need to require a heart transplant.  My heart goes out to you.  Please stay strong and hopeful.  I send well wishes for health and success your way.  Take care.

[djb85]

Anti depression tablets were discussed and I refused. That was just my personal preference due to experiences with a friend who suffered with depression and how she was on the meds.


The doc was happy with my decision to refuse and went about it with other ways. If I was severely depressed I may have made another choice, but I convinced myself I was strong enough to just deal with it. taken a while but I am alot better than I ever have been.

[djb85]

Thanks for sharing your experience. Really helps bring things I to perspective. I am glad you finally have this sorted!

[ToriaSteph]

Thank you for your response.  I will relay this to my daughter.  

One more question, did they ever prescribe any antianxiety or depressants for you?

[tom_h]

My first SVT episode was at 6.  I got it ablated at 60.  It RULED my life.  I was into several competitive sports which required bursts of maximum respiration and physical output.  It was always a dice roll.  Some days, I was fine. Others, I was forced to withdraw.  Mine were the kind that would run on and on.  Fortunately, it responded well to Valsalva maneuvers so once my respiration returned to normal, I was able to convert them.  But sometime, the episodes would last for 45 minutes until I cooled down and got it converted.  I was anxious during each and every one of them, so I sympathize with you.  A sports cardiologist dissected the "anatomy" of SVT for me, and this really helped to allay my fears that I was going to drop over dead one day during these competitions.  Still, when one occurred, that was the end of my day.  I estimated that over the 54 years that I had SVT, I probably experienced in excess of two thousand episodes; not brief runs, but full blown, self sustaining SVT.  Ablation therapy gave my life back to me.  It actually gave me a life that I never knew.  Because before, and especially when I was young, matter how hard I pushed it, SVT was always in the back of my mind. Was today going to be ruined? Did I just travel cross-country for nothing?  Now an old man, my competitive athletic days are way behind me. But it's such a weigh off my shoulders, such a pleasure to give balls to the wall output (for an old man), every ounce of what you've got left, and not think about SVT.  For me, it amounts to practically a miracle.

Your SVT is most likely caused by an errant muscle fiber, just everybody else with SVT has.  The key is to locate it, and the only way to locate it is to get it to conduct.  For me, it was so easy for them to stimulate it.  For others, not so.  You may find that as you get older, the episodes will become more frequent, and then may be the time to try and find it again.  In the meantime, it might be good to talk to a cardiologist so your concerns can be brought up, and perhaps you'll be a little less fearful of the next event.

[Elli126]

I completely agree with you. I let my SVT, PVC and PAC ruin my life for years, fingers on my pulse worrying myself into crazy rhythms. It robs you off any good times you may have. If you let it.

[djb85]

@ ToriaSteph - I would say in my experience, anxiety has been worse than the SVT itself, my mind being so scared of going into SVT or dying has terrified me out of doing many things over the last 10 years I wish I had.

I am still here and this is what has chilled me out over the last year, I have had this condition since 16, and as scary as it can be, I would advise crack on with life and enjoy it. The heart is pretty amazing and can handle some pretty strenuous rhythms. Keep fit, don't drink Anxiety away with alcohol, I tried this at one point, it doesn't help.

Don't think about your heart rate too much, obviously, don't be neglectful of what the body is telling you, but at the same time don't focus all your time on it. I spent years with my fingers on my pulse looking for every skipped beat... I realized, my axiety was actually causing them. Take for example I am pre-ocupied. I can play a gig, sing, play guitar without even one thump in the chest. As soon as I am sat in a quiet room, with time to myself to think, I induce my own PVCs. I am convinced.

Don't let it stop you living.

[djb85]

Crikey, I hope they get this all sorted for you! I am in the UK so no chance of seeing that Dr.

[tom_h]

Wow, what an ordeal.  I hope the procedure works for you.  Please let us know how you make out.

[AlexisB82]

I am 31 and am in the exact same boat. We have ablated my heart 3 times this past fall (fall 2013) and was supposed to put a 1 lead pace maker to my sinus node to lower my heart rate. I pass out etc from it. it stays around 130 resting, and can and will go up to 180 just sleeping. I too am on fleccanide. The issue is tho i already am having very low blood pressure. Anyway, this thursday we are doign a procedure that was normally done in the 70's it is called a stellate ganglion nerve block of the sympathactic nerve. IF it works, it will be a miracle!!! If it doesnt, i'll have to have the AV node pacemaker, which my heart is likely to reject so to speak where top chambers will do what they wish while bottom will be controlled. if this happens i will have to the pacemaker removed, and a maching used to pump my heart until i have a transplant. I originally went into heart failure 10 years ago, but came out of it after 2 years. and have since then, been doing ok, until about a year ago when bp started dropping and heart rate sky rocketing. I wear a 30 day holter monitor in december as my last hospital stay in november 13, i started to have Torsades and Long QT Syndrome. I hope you get some answers!!! I'm in the houston med center, if you are close, Dr Biswajit Kar (head or cardiology at memorial hermann) is my cardiologist. he's amazing.

[MichelleP_3811]

I am not a doctor so I can only give my advice based on personal experience.  By all means do what feels right to you if following the guidance of your EP feels appropriate.  This said, I had an ablation a few years back and it took quite a while for my heart to settle down.  My resting rate could be in the 120s and I am more than twice as old as your daughter so her heart rate is likely higher than an adults and can tolerate it.  I was not put on any meds after my ablation either.  It generally isn't necessary for atrial tachycardias.  What type of svt did she have do you know?  Was it WPW?  What happened for her to be admitted into the ICU?  Thing is my svt was treated as benign and it was my choice to correct it or not.  I had avnrt and mine would convert on its own so in that respect I never needed to go to the hospital though as I got older my episodes started to last longer.  If she is indeed just having sinus tachycardia my guess is that her stress is adding to an already overactive heart.  Like I said, it took a good 3 months for my rate to go down, and it took almost a year for my ectopic beats to settle down to not being noticeable.  An ablation really works over the heart and the heart gets kind of use to beating at a certain pace but it is a very resilient muscle so it will recover but it just takes time and patience.  Since your daughter is being home schooled take some time each day to do some light meditation or yoga and deep breathing.  It is important for her to learn how to manage her stress not just for her heart but for life in general.  Like I said, most atrial svts are not a threat to a person's life.  WPW might hold a bit of a higher risk because the lower chambers the ventricles are involved but if your doctor is seeing this as just an elevated sinus rhythm it is likely just fear and stress that is elevating her rate.  The heart just needs some time to forget it use to beat so fast is all.  Of course follow the advice of your EP as you see fit but if it were me I would really hold off doing anything further for at least 6 months.  Let her heart have a chance to recover first and then see where she is at.  Best of luck and keep us posted on how she is.

[ToriaSteph]

My daughter is 17 and was diagnosed with SVT.  She had an ablation this past November and was put on Flecainide for 2 weeks.  She wasn't experiencing any type of tachycardia until 1 month after the surgery.  She is now on a heart monitor and they are saying her heart rate is elevating into a sinus rhythm.  She was up to 170 bpm which worried us due to her being at 174 when they admitted her into the ICU and did an ablation 3 days later. It was comforting knowing it was in sinus rhythm.  We have an apt next week to discuss the findings of the monitoring tests.  

As a 17 year old my daughter is experiencing anxiety and stress and says she doesn't feel normal.  Is there any advice you can give me to help a 17 year old deal with this.  She is a senior and has been put on home schooling and feels she has been cheated out of her most important year in school.  Any feedback you have would be much appreciated.

[MichelleP_3811]

Definitely seek a second opinion.  If you are on meds that may have blocked the issue as well if you only have 3 episodes a year it may indeed be next to impossible to induce.  The hallmark of an accessory pathway svt where you have an extra muscle fiber in the heart causing a loop in the signal with rates like you have is that it starts and stops in one beat.  One minute you are fine and the next your heart is racing then just as quickly in one beat it can stop.  Things you can try to do to stop an episode is bear down like you are straining to go to the bathroom and hold your breath or drink a very cold glass of water.  I had an accessory pathway svt called avnrt but there are others, wpw and avrt.  I never went on meds and didn't get it ablated until my 40s that said, mine would convert on its own, it sounds like you have issues with yours.  Afib is different and may be the result of of an aggravated heart from the accessory pathway svt.  If you get that cleared up you may clear up the afib as well.  But definitely seek a second opinion with a well experienced EP and see what they have to say.  You just may not be active enough yet to ablate but I am not certain that Flecainide is appropriate or wise for your situation but do follow what you feel best.  In the minimum seek a second opinion.

[djb85]

Thanks for the replies, I guess me saying "Structurally wrong" may be down to ignorance on my part, in regards to how this all works.

So I had years of stress tests and Echo's, until one of my episodes of SVT was pretty severe and kept kicking back in after being converted. They kept me in for a week to begin full time Flec treatment and referred me to a specialist for an ablation.

They tried everything to induce the bad rhythm, was pretty hellish. The did a full electrophysiology study and found nothing. Pretty confusing, I am seeing a new cardiologist in a few weeks to confirm what will be done in the long run.

[tom_h]

".....The verdict is there is nothing structurally wrong with my heart and therefor nothing that can be done......"

Hey there.  They're feeding you a lot of BS.  SVT can sometimes be a result of a structural issue. But most of the time, it's an electrical issue.  Ask your cardiologist if an accessory path is a structural or electrical issue. (It's electrical).  My heart at one time was superbly condition through sports, yet I suffered from SVT episodes nearly all of my life.  When I was nudged towards ablation therapy to eliminate it, I had a stress echo performed  This is standard procedure because they want to make sure that there's nothing wrong with the heart that could be causing the episodes.  My cardiologist really pushed me using the standard Bruce Protocol stress test.  I punched out at 13 minutes, exhausted and had to be helped to the exam table for the echo.  As expected my heart was structurally fine.  From there it was a progression towards an electrophysiology study with an ablation that cured me of SVT.  If you look in the world of professional sports, especially basketball, you constantly hear of athletes who were sidelined due to SVT.  These guys have finely conditioned hearts.

You don't have to endure this your entire life like I did.  Ablation therapy wasn't around when I was 28.  You can go in on a Thursday and be back at work by Tuesday and 100% in a couple of weeks.

If this is the line they're you're feeding you, find another cardiologist.  Hang in here and let us know how you're doing.  Lot's of us have had ablation therapy and now live lives free of SVT.

[Elli126]

I'm pretty much in the same boat as you. Adenosine a few times a year. (Hate it) but so far no afib. Are you saying they can't ablate yours at all? I also have PAC and PVC and I know not much can be done about them. As far as cause goes, no one really knows and yes it's pretty much with us for life unless ablated.