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

[tom_h]

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. :)

[itdood]

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.

[IA64]

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

[IA64]

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 )

[itdood]

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.

[researcher09]

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?