So EP said I can't do anything about it. I'm doomed ?

[IA64]

This is a 2nd thread , an update to an old one which I'm going to quote here :

" Hello everyone, I've been having heart palpitations since 10 years and now that I turned 31, I'm on a business trip since 45 days.

I've had dozens of ECG, Electrocardiography, MRI etc.. which ruled out any abnormal health structure. That was in 2008 . One doctor said that RVOT was the cause of my palpitations ( I get many everyday ). Another doc confirmed that I seem to have PVC/PACs RVOT randomly.

I went for a RF ablation ( cost $31,000 covered by insurance ) but unfortunately they were not detected so doctor advised to live with them as these are probably harmless and symptomatic only.
Since 3 days, I' ve been having terrible episodes of palpitations, stomach burning sensation, left chest pain ( stabbing that would come and go ) I feel like all my nerves or muscles are weak and cramped.
I feel nervous all the time. Sometimes palpitations ease when I sit down but if I go to bed I can't sleep as they start the minute I lay down and it comes and go as I change sleeping position. I also have this burning sensation moving in my back and left chest.

I feel like I'm about to die and it happened that when I think it's coming, I get an immense feeling of fear or adrenaline rush in my body which makes me feel like my heart is stopping and beating very slowly.
The last time I had them that bad was 7 years ago when I was on a business trip as long as this one ( longer than 3 weeks ). I do usually get palpitation episodes frenquently but not the terrifying one.
I was in perfect shape when I arrived 5 weeks ago as I could go out joggin, boxing etc.. but lately the minute I stand up and walk i get almost paralized from palpitations.

One last thing I noticed is that arousal/masturbation etc.. triggers palpitations immediately.
Also pressing on my stomach / end of my chest will trigger them
Am I having serious heart issues or it's anxiety? Can palpitations over time damage the heart structure ?  what do do ? I tried beta-blockers and Calcium chanel blockers in the past but nothing helped.
I'm returning to home country on Friday as this is affecting my work and life."



Now after 3 months here's the update :


I went to the US and now I'm back to home country. I did there many tests ( ECG/EKG 4 days holter + MRI + Echocardio + Stress test

Findings :

I have

- PVCs ( Bigeminy, Trigeminy ) and in couplets and triplets ~ 1200-1500 / day
- PACs ~ 400-600 / day
- Atrial Tach / SVT ~ 1000 / day

Doctor gave me Betablocker which did not help at all.

Echo result was excellent

Stress test is OK

I quit smoking 2 months ago and still cold turkey ~ that did change nothing.

MRI results turned to be a bit concerning but doctor wasn't : They found one micro-aneurysm in the Right Ventricular Outflow Tract but everything else is normal ( no ARVC/D )

He said this might be triggering the arrhythmia but it's not life threatening.

- Flecainide did not help. Isoptin did not help . Indreal/Nebilet did not help.


Now for the worst part... I am not a cather ablation cadidate. Why ? because doctor said that my PVCs and PCAs are multifocal. They are not from the same place and don't have a dominant pattern or morphology.

So what now ? I'm doomed ? seriously I'd rather die than live with this horrible nightmare that destroyed 4 relationships in my life and made me unable to travel to pursue my career

[IA64]

Hello researcher09 and thanks again ! !

University of California-San Francisco Medical
Center, San Francisco CA 94143
N/A 2010-2012 Cardiac Electrophysiology
Fellow
The J. David Gladstone Institutes,
San Francisco, CA 94158
N/A 2010-2012 Cardiac Electrophysiology
Research Fellow



Looks good ? no idea

[researcher09]

I don't think your case is hopeless at all.  10 years from first detection of arrhythmia is not a long time.  However, the fact that you have AT, SVT and RVOT PVCs tells me you have to be concerned as is your EP for him to attempt the RVOT ablation.  The most important way of telling whether a EP is skilled at ablations is (1) how many procedures has he done where he is the principal operator of the most complex procedure likely to be encountered in your personal situation, this would be RVOT in your situation unless your AT is atypical in which case he needs to be experienced in both left sided and RVOT ablations.  (2) how many does he do currently on an annual basis of the  same procedure.  (3) what is his success rate and complication rate for the past few years for that procedure.

Where he did his EP fellowship and the mentor are important if the EP is relatively new, which in this case he is and Mass General has had a high volume program so he should be well trained as you suggested.  Much less important are the medical schools that he attended and honors received as those are not measures of clinical skills.

If the center is St. George, there is only one EP lab that covers the gamut of arrhythmia procedures.  It will be tough for such a program to do more than 25 VT procedures annually is my guess.  You can check with EP to see the what number actually is.  

[Mikaakim]

Wanted to add

"Your heart is as interesting to monitor as your liver"


Thank you I needed to smile/laugh  (for real, not lol) and that did it

[Mikaakim]

Is_somthung_wrong

Wow...you know what... Your original response I think I really needed to hear....

Some may say harsh...but that was actually a reality check I needed to hear...and I didn't even write this post....

You see...I know my anxiety and fear of my heart stopping is having an effect on me...

I take my pulse maybe every 20 mins... And change I can at times get overly worried... I watch tv/sleep with my hand on my heart to feel it beating....

What you said genuinely resonated with me.....

I need to detach....  If it stops... Well you are right...I won't be able to do anything about it anyway...

I know it won't be easy ...but you know what as of tomorrow morning I'm taking your advise.... I'm going to let it do its thing....

Ultimately I think my anxiety over it is doing more health damage than my condition...

Thank you for your bluntness.

[is_something_wrong]

Thank you.

I believe it's important to accept our mortality. For example, if you were told that by 100% certainty, you will have your palpitations, but your heart will not stop for another fifty years, you would begin to ignore your palpitations immediately and feel great relief, even if the palpitations were still there. Unfortunately, no one can say such a thing (I've wished for such a guarantee for years.. and I believe all my research has been done to bring me closer to an answer. Certainty.)

We should take "reasonable steps" to avoid premature death. By reasonable steps, I mean avoiding obviously unhealthy habits like smoking and substance abuse, trying to live healthy, exercise on occation, check blood pressure maybe once a year, etc. If we do more (like checking blood pressure daily), there will be very little benefits, but life quality will be reduced. If you spent your entire life in a hospital you would possibly live a little longer but life quality would be horrible.

Do we want a life trying to control something that is essentially uncontrollable, or do we want a life where we can live and enjoy, with accepting slight risks?

[IA64]

Hello researcher,

Thanks for your opinion but my palpitations started 10 years ago not when I was 10.

Do you mean that with time, my situation will get worse ? say 10 years from now  ?  I'm at high risk of developing  AF ?

My EP resume goes like that and he's been described by his fellows as one of the most skilled in Harvard MS

2001 Honor, Alpha Omega Alpha Centennial Poster Competition
2002 Best Medical Student Presentation, Detroit-Michigan
2003 Dean’s Honor List, college and medical school
2003 Alpha Omega Alpha Honor Medical Society, member
2003 M.D. degree with Distinction (ranked 1st in a class of 74 medical students)
2003 Stephen Penrose Award (for scholarship, character, leadership, and contribution
to the University as a whole), American University of Beirut
2004 American College of Physicians Annual Clinical Research Award
2007 Massachusetts General Hospital Department of Medicine Award
2007 Massachusetts Medical Society Annual Research Award


etc... really outstanding profile

So you believe also that my case is hopeless ?

[researcher09]

Glad to hear that you quit smoking.  You mentioned noticing palpitations starting around 10 so having multi-focal triggers after over 20 years of progression is not at all surprising.  Seems that the clinical EP would have wanted to address both the SVT and ROVT/pvc during your ablation.  That fact that he wasn't able to map it with pacing is a concern to me - that he is not very skilled.  I would discount his opinion that because he was successful, that a more skilled EP would also be unsuccessful.  As I had replied in my original response to your first question, I don't think medication will help.  Medications that address upper chamber triggers are typically counter productive for lower chambers arrhythmia unless you go with the most toxic option like Amiodarone or its derivatives (Multaq for example).  IMO pacemaker is not a good option for a young person like you as it doesn't do anything about AT, PACs or PVCs and the risk of developing AF which is high in your case and it is 50/50 whether it improves or reduces your quality of life.