four doctors and no answer

In 2003 I had an ICD placed b/c of family history and a very long QT interval.  I have had it since then and it has not recorded any episode or delivered any appropriate therapy. When it was placed, it perforated my heart, and had to be replaced 2 days later.  In 2005, the battery was recalled, and it was replaced again.  A month ago, it delivered an inappropriate shock b/c the lead is fractured somewhere.  It is now turned off.  I was placed on a beta-blocker.  Three weeks into the meds, I began having chest tightness and shortness of breath.  I went to my cardiologist, and the ecg was normal.  He suggested ibuprofen for swelling in case I had inflamed chest wall that was causing the symptoms.  Two days later, the tightness was still there so I saw my FP.  He took a chest x-ray, which showed nothing.  He sent me to a pulmonologist who did a CT scan.  This came back negative for a blood clot, and she could not identify any problems from it.  She prescribed Nexium for acid reflux, in case that was causing the symptoms.  On Friday, with flu symptoms, I went to an urgent care center and had a flu test-negative.  I can get some relief from the tightness/pressure if I lay face-down on the floor.  Otherwise, it is constant.  I am not overweight; I have never smoked; I am 34 and am not diabetic.  The long QT is the only issue I have, and it's never presented itself-other than on the EKG and holter monitor.  My questions is, what do I do for this tightness in my chest?  I cannot continue to live with it, but no one seems to be able to help.  Could the beta-blocker have triggered something in my heart?  Could the shock have left some lasting effect?  Any ideas????

[NTB]

which beta blocker?

some have Intrinsic Sympathomimetic Activity, maybe you are especially susceptible

[BAM3333]

The beta blocker was Bystolic.  I'm having an echo tomorrow to see if I have pulmonary hypertension.  No idea how this came about at the same time as the defibrillator malfunctioning.  Seems oddly coincidental.

[stevie_wonder]

These symptoms could be from the Bystolic. Bystolic is not one of the most common drugs used for a long QT. There are other betablockers such as Metroprolol or Bisoprolol that have fewer symptoms. Was your fractured lead removed?

[BAM3333]

I have tried metroprolol and did not tolerate it either.  My lead has not been removed and my device is turned off pending the genetic test results for the type of Long QT I have.  My EP doesn't want to do the surgery unless absolutely necessary.  I'm torn.  Had an echo today and am waiting for my doc to call with the results.