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Avatar universal

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

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
30 Responses
1124887 tn?1313754891
I'm going to be a bit mean (I'm sorry..) but your problem is not your palpitations, it's your anxiety. Anxiety is treatable even though your palpitations possible are not.

You do have some palpitations, but the number is not extremely high. There are many of us (also on this board) who have a far higher number and still live a normal life. My mom has on occations 5-10k PVCs daily. She went to a cardiologist, was told they are benign, accepted that and went on with her life. I envy that. Why did it happen? Because she doesn't suffer any anxiety disorder.

I have (I quote my Holter report) "a very low number of narrow complex ectopics (PACs)" and on occation they still freak me out. I'm beginning to understand that it's the anxiety which is the problem. You need to treat the root, not the symptoms.

What you need to do (I know it's not that easy) is to "detach" from your heart. Let it beat how it wants to. You can't do anything to control your heart (it controls itself) so trying to do so is meaningless. You already know that palpitations can't kill you (there is really no way they can). You seem obsessed about your heart and how it beats. Why? Do you think you can prevent your heart from stopping by controlling it? In the extremely unlikely case your heart stops, you are dead anyway, and you can't do anything about it even if you monitor your heart (oh crap, there it stopped, what am I supposed to do now?)

You can't control everything. You can't prevent an aircraft from crashing by monitoring turbulence and engine sounds, and you can't prevent your heart from stopping by monitoring it.

You say that you would rather die than living with your palpitations. I can understand that, but it is an irrational statement which more or less proves that your anxiety is the problem. If your problem would be fear of death in itself, you wouldn't. Your problem is that your anxiety symptoms (rather than palpitations) are so intense that you can't live with them.

There are lots of treatment options for anxiety. Medications might help. But more important, you need to detach from your heart and to let it beat just how it wants to. Your heart is no more interesting to control than your liver.
612551 tn?1450022175
Well said, my anxiety is minor but I take your pragmatism to "heart" - great advice.  My afib goes mostly unnoticed, lucky part of bad luck in my case.
Avatar universal
Thanks guys. The problem is that I've been on Xanax and it did help a lot but only when I'm doing nothing. So when I'm idle or sitting or resting, there is no arrhythmia but imagine that... I can't have a proper sexual life. Anytime during intercourse I get those very nasty PVCs that push me to pause and take a minute break. They then stop, and come back if I resume.

I started exercising everyday and I can run for 20 mins non stop and I feel nothing. Only when I rest, they start and wont stop for few hours.

When I said i'd rather die, I meant that my life isn't about feeling some weird beats that are annoying no. I don't mind having PACs as I find them annoying a bit but controllable. SVT is also OK for me but the PVCs are really disturbing. I feel my head is about to explode, sometimes about to faint / chest discomfort / shortness of breath that comes and ago every couple of seconds.

here's a screenshot of the ECG report :


Also what's about that one micro-aneurysms in the Right Ventricular Outflow Tract ?  Doctor said it might be what's causing all my arrhythmia but can't do anything about it. He refused to say that my heart structure is completely normal but also said it's not abnormal.

Thanks again guys.

1124887 tn?1313754891
It clearly sounds like your ectopics have some adrenergic cause, if they are worsened during stress and intercourse but not during running. Beta blockers should help, but often they are given in too low dose.

If you have tried Toprol or similar beta blockers in doses of 10-50 mg/day, you haven't tried beta blockers properly. Some people, but not everyone, get an effect from a dose this low. How high was your dose?

Also, Sotacor is a possibility. It is a beta blocker with additional antiarrhythmic properties.

If your average heart rate is 91, you probably tolerate a high dose. Ask your doctor?
Avatar universal
Doctor initially suggested Concor ( Bisoprolol ) but my Father who happens to be a surgeon ( urologist ) refused it due to many side effects and  erectile dysfunction symptoms.

I'm on Nebilet ( 5mg/day ) that doctor said that it should be very effective but it's doing literally nothing.

Also my blood pressure goes up to 160/100 when I stand up to take it at the check-up room. 1 minute later it's 130/88

1124887 tn?1313754891
Sounds like you have an exaggerated adrenaline response. My doctor prescribed Metoprolol 100 mg and told me to increase the dose to a point where I had effect but not unbearable side effects. At 100-200 mg I have good effect. I've even tried as high as 300 mg.

Nebivolol is not used to treat arrhythmias.
Avatar universal
Actually on the internet it says that Nebivolol is used to treat high blood pressure but had great effect on arrhythmia.

Not sure what my EP is doing here but calcium chanel blockers did not help. Flecainide/Isoptin and Inderal were almost a placebo pill.

What's really strange is that my PVCs are multifocal or polymorphic. EPs were astonished. They literally said that they rarely see anything like that. It's coming from everywhere were and the only way to map it is to go for an ablation but it will probably do nothing more than reduce a bit the number of episodes.

Nothing can be done to control them.

Maybe a pacemaker ?  
12492606 tn?1459874033
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.
Avatar universal
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 ?
Avatar universal

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.
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?
Avatar universal
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
12492606 tn?1459874033
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.  
Avatar universal
Hello researcher09 and thanks again ! !

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

Looks good ? no idea
12492606 tn?1459874033
UCSF has a good clinical EP program.  Olgin does a high volume of VT ablations.  I am not familiar with the Gladstone foundation.  It looks like they are funding translational research such as stem cells and genetic basis of diseases - most probably not applicable to ablation research.  Would your insurance cover something done outside of Lebanon?
995271 tn?1463924259
I was getting 6,000 PVCs per day back in 2009.  I tried treating it with medications (BBs and CCBs), that just made them worse.  I went to an EP, very good one, and he said he couldn't help me.  I went to a GI because I was having GI problems too.  I had an endoscopy, colonoscopy, everything was fine.  I had three echos, 2 nuclear stress tests, 3 regular stress tests, three times on holter monitors (for about 2 months total on holter), countless EKGs, and a cardiac MRI.

Everything was "fine".  

I felt, as you say, doomed.

I brought my wife to what turned out to be my last cardiologist appointment to get to the bottom of this bull crap in October of 2009. I brought her because I just wasn't hearing what I wanted to hear, that there was some solution to the problem.  I needed a 3rd party in the room to help me, that's how much I couldn't focus anymore.  It was the best thing I could have done.

The cardiologist and my wife began having a conversation as if I weren't in the room, and I needed to hear it this way.

What I heard was that there wasn't anything they could do to help.  But one thing was for sure, I needed to get my anxiety under control.  They both looked at me and said I was getting deeper into that hole.  PVCs be damned, they were scared about where I was heading.

So we left, my wife kicking me in the ***, to get my anxiety under control.

There are many different ways to get it under control.  Xanax, in my humble opinion, is the worst possible thing you can do for it.  I tried it, had to keep increasing the dose for it to help until one day I woke up with body vibrations so bad I thought I now had parkinson's.  

My best results have been with managing my work related stress, exercise, socializing (get out and party), NO BOOZE, NO CAFFEINE, lots of water, I get 20 minutes of sun on my back per day if I can, and meditation.  Meds I have used, and would use again if I go back in the hole.  The best result I had with meds was with an SNRI.  My goal is, and will always be, to manage what ails me WITHOUT MEDS.  

I still get PVC flare ups from time to time.  I had to stop running on Sept 26th due to a stress fracture in my right lateral condyle.   Boy did I know that was going to be a rough ride.  I lost what I felt was the main source of exercise keeping my anxiety at bay and I knew my heart would be remodeling with the change.  About 4 weeks into the lay-off, I felt my old familiar friend, anxiety.  Around the same time, my PVCs started back up.  This "deconditioning" phase lasted about 4 weeks.  I'm sorta able to start back to exercise but not like running!  I'm trying to deal with it.    I bought a rowing machine and that is almost around the intensity of running.  almost.    

I had PVCs worse than you.  They went away without ablation.  Probably because I got my anxiety under control, or perhaps it was something else.  I don't know.  I'm very glad I didn't force an ablation because I could have ended up worse - off. Best of luck to you.
Avatar universal
Hello researcher09.

I don't mind paying up to $100,000 to get rid of this nightmare. I gotta check with my Insurance put just in case they don't , I'm ready to pay.

But then pay for what if my EP in USA ( he's in the US ) said that ablation won;t help as the PVCs/PACs are coming from almost everywhere ( multifocal )
Avatar universal
hello Itdood,

Thanks for sharing you story. Out of curiosity, what was the name of the med you took ? I heard that SNRI should be the last thing to try as the side effects are very severe :

Because the SNRIs and SSRIs both act similarly to elevate serotonin levels, they subsequently share many of the same side-effects, though to varying degrees. The most common include loss of appetite, weight, and sleep. There may also be drowsiness, dizziness, fatigue, headache, increase in suicidal thoughts, nausea/vomiting, sexual dysfunction, and urinary retention. There are two common sexual side-effects: diminished interest in sex (libido) and difficulty reaching climax (anorgasmia), which are usually somewhat milder with the SNRIs in comparison to the SSRIs. Elevation of norepinephrine levels can sometimes cause anxiety, mildly elevated pulse, and elevated blood pressure. People at risk for hypertension and heart disease should have their blood pressure monitored
995271 tn?1463924259
See I've heard the opposite, that SNRIs are easier to get on and off than SSRIs.   SSRIs have their share of problems too.

I tried SSRIs (zoloft) and couldn't do it, my anxiety went through the roof.

SNRIs, no problems at all.  Been on and off it 3 times since 1998.   Never had a problem coming off it, no withdrawal like with some SSRIs.

I was taking Serzone.  worked great when I needed.   Pulled from the market due to liver issues but still available from Teva under generic name, nefazodone.  Never had an issue with my liver on it, I would get a blood work every 6 months.
1423357 tn?1511085442
My wife went from an SSRI to and SNRI and back to the same SSRI.  The switch from Paxil (paroxitine) to Effexor (venlafaxine) was a taper down while bringing on the Effexor.  She had a few days of occasionally odd behavior butbit wasnt too bad.  The swap back to Paxil 7 years later was a rapid switch and was accompanied by brain zaps which lasted about 2 weeks.  We're 65 year old people, so take this for what it's worth.  I think her libido was much stronger with the SNRI than the SSRI.  I kind of wish she had stayed on the Effexor. :)
12492606 tn?1459874033
Drivers for PACs and PVCs can't come from "everywhere".  In the worse cases, people with long standing persistent AFib for example, there could be as many as 5-6 triggering locations typically from boundaries between healthy and scar tissue.  "Everywhere" would imply that your whole heart is scarred and that is never the case for someone that is living and especially for someone who hasn't had a heart attack.  IMO your EP is telling you indirectly that he doesn't have the skill and experience to handle your case.  Multifocal arrhythmia is not rate at all, but it does take skill to map.  An accurate mapping is essential for a successful ablation.  Most AF ablations are multifocal and 200K of those procedures are done in the USA annually.  

Since you have the means to get the best treatment,  you may as well go for the top expert  VT centers in the world.  
Texas cardiac assoc. Austin*
U. of Oklahoma*
Johns Hopkins
Barnes-Jewish St Louis*
Intermountain heart rhythm*
U. of Alabama
Herzzentrum Leipzig*
Charite Campus Virchow, Berlin
Hospital Haut Leveque, Bordeaux-Pessac*

These all do at least 50 VT ablations per year and some exceed 100 cases per year.  Lots of choices and big variation in private pay cost.  * - means they have stereotaxis equipment which could be an important factor in getting better long term results with lower major complication risks.  If you can get the top gun at the location, then you may not need it  However, most top guns will use it anyway if they have it especially for VT/PVC ablations.
Avatar universal
Thanks a lot researcher09,

I'm a bit surprised reading your post. I thought multifocal PVCs were indeed challenging to get rid of.

I will contact U. of Oklahoma as I have friends living nearby.

Next update in 6 months. Cheers and thanks a lot everyone for your opinion.
12492606 tn?1459874033
Regarding OU.  Jackman is retired but he is still there to consult.  Nakagawa would be the man if you can get him.  Having Jackman there to watch over things is always nice.  I am not saying it is not challenging.  Your EP however is saying it is impossible, far from it in expert VT hands and they deal with post attack patients that are in much worse shape than you and on the edge of heart transplants or death.
Avatar universal
researcher09, THANKS !

Just a little concern, do you think that my case will get worse in future if left untreated regardless of how symptomatic it is ?

I'm asking your personal opinion.
1124887 tn?1313754891
I can't help but to think (maybe because Norway doesn't have the health care resources which US has) that ablation of 1000 PVCs or so seems a bit excessive.

The only reason for doing so (given that the PVCs are benign, which they in your case are) must be the distress they are causing. I don't know how your health insurance works, but here, you wouldn't have a chance getting a doctor to approve (or the government to pay for) such a procedure. They would barely offer you a beta blocker or some treatment for anxiety.

I'm not convinced that your doctor would approve doing an ablation for multifocal PVCs (as you are saying they occur from "everywhere") based on the argument of emotional distress only. The procedure is more risky than ablating a single spot, and more difficult.

Also, the cost seems crazy to me. To compare, at the best private hospital in Scandinavia (specialized in cardiac ablations and surgery), an EP study cost $3.500, an ablation cost $8.000 (including the EP study) and PVI ablation for atrial fibrillation cost $10.000. For other readers who need to pay for ablation themselves, it could be a very good idea to go to Denmark to have the procedure done instead of paying ten times as much in United States. I can send a link to the hospital if you are interested.
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