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Torsades de Pointes

Prolonged  Q-T Syndrome

What you and your doctor should know

 

Holter Monitor EKG recording of Torsades Sudden cardiac death

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The info on this website is from my personal experience as a Torsades Sudden Cardiac Death survivor. I am not a doctor. I'm an engineer & scientist, so this information is derived solely from my personal experience and research. Since there is very little information on Torsades available to the medical community or patients, I am endeavoring to provide as much information, tests and documents I have available from my own medical records. It is my fervent hope that this information can help others recognize the problems and seek medical assistance. I also hope to educate the medical community about Torsades from my records and experience. I do not want to see anyone else die from this difficult to diagnose condition. This info is provided as an informational tool as it applies to my own experience with Torsades and what has worked for me. It is not intended as authoritative medical advice. You should call 911 or contact your doctor if you are experiencing severe medical problems or any kind of chest pain.
You need to learn more about Torsades if you have ever had:
  • unusual reactions or allergies to various medications
  • unexplained chest pains
  • Coronary spasms
  • Coronary artery spasms
  • unexplained arrhythmia
  • sudden onset of fibrillation
  • Chest pains due to stress or anxiety
  • Chest pains diagnosed as muscle spasms
  • diagnosed as having psychosomatic or psychological chest pains
  • esophageal spasms
  • Chest pains despite having normal cardiac test results
  • History of Slow heartbeat
  • Prolonged Q-T syndrome
  • unexpected sudden cardiac death at any age
  • More than one family member which had sudden cardiac death
This is a sudden silent killer which is rarely diagnosed because there are no tests which can definitively detect this condition. Only a small handful of electrophysiologists have experience with this condition. This is currently believed to be a rare heart condition but I am certain it is much more prevalent than believed.  I am encountering numerous people who have been misdiagnosed and it is very difficult to persuade a physician to consider Torsades since it does not show up on cardiac diagnostics, yet it can cause a sudden death attack in a perfectly healthy person if you take the wrong medicine. Even a simple antibiotic can cause this attack. It is congenital, yet rarely diagnosed unless a member of the family dies while being recorded on an EKG.

I was a sudden cardiac death survivor, wearing a holter monitor which recorded the entire event. Just 10 days prior, I had been told my heart was in perfect health on every cardiac test imaginable and was in no danger. I had to insist on wearing a holter monitor to record one of the attacks I was having and subsequently went into cardiac arrest while wearing that monitor. At the age of 45, I had to die to prove I had a serious problem. The only way I was diagnosed was when the doctors finally saw the holter monitor recording of the unique Torsades signature heart rhythm which only occurred after 7 minutes of fibrillation. The Torsades signature rhythm only appears for less than a minute at the final moment of death. This is the first and only recording of this magnitude. 

Sublingual nitroglycerin spray is the only thing that kept me alive during the years I was suffering from Torsades attacks but not yet diagnosed. The doctors had only humored me by prescribing the nitroglycerin I insisted on having, but that alone is what saved my life for 20 years and the hundreds of Torsades attacks I suffered during that time caused by taking certain medications listed on this site which are the catalysts that cause sudden cardiac death in a Torsades patient. By spaying the sublingual nitro at the onset of an attack, it neutralized the Torsades sudden cardiac death. But the bad aspect of relying on nitro as your only protection is if you fail to use the spray quickly enough. Any hesitation can allow the heart to go into fibrillation. Once fibrillation begins, the nitro will not stop it. This is how I went into sudden cardiac death. I waited and did not use the nitro as I had done each previous episode because I wanted the doctors to have a good reading on the holter monitor I was wearing. You do not want to go through this. It is the most horrible experience imaginable and I only survived because the EMT's arrived in 3 minutes. According to the doctors, 10 minutes would have resulted in brain death. Every minute your heart is in fibrillation, it is not pumping blood. If it is not pumping blood, you are not getting oxygen to your brain and organs and damage begins to occur. Having someone perform CPR will keep you alive and minimize cell and brain damage. This can keep you alive until EMT help arrives. Having a home defibrillator would also help, but that only stops the fibrillation. A defibrillator does not restart the heart unless it has a pacemaker. This is why families with Torsades should have defibrillator/pacemaker implants.

The reason I recommend sublingual nitro spray over the nitro tablets is because it lasts for years while the nitro tablets are only good for about 6 months. They tend to disintegrate and lose their effectiveness and cannot stand to be subjected to heat, moisture or sunlight. The spray is much better, but do not use too much. One or two sprays should be sufficient. Too much can cause severe drop in blood pressure and possibly cause a stroke as well.

In the hope that my knowledge and experience with this condition can alert and save others from having to go to this extreme to obtain the proper medical treatment, I have created this website with comprehensive medical information from my own records, symptoms, lists of medications and precautions to help inform others how to recognize this elusive and deadly condition.

 

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