Prolonged Q-T Syndrome
Finding a Doctor
If you continue to experience chest pains and bizarre reactions to medications (especially if those symptoms occur within 24 hours after taking one of the medications listed on this website) after you have seen a cardiologist and have had all of the appropriate cardiac tests such as nuclear stress test, echocardiogram, EKG, 24 hour holter monitor recording or other cardiac CT, MRI scans or a heart catheter procedure and the results show no problems or show a prolonged Q-T syndrome, you should make an appointment to see an electrophysiologist (also called an electrocardiologist) who is experienced with Torsades de Pointes for additional evaluation. The electrophysiologist can also give you a loop or fib monitor to take home to capture your attacks. Make certain the electrophysiologist has some experience with Torsades de Pointes.
Keep a diary of the medications you take. All medications, even over the counter, recreational or a medicine you may only take once in a while. Indicate times, dates and dosages. In this same diary, also keep a record of chest pains and other unusual symptoms and indicate when each symptom occurs and the duration. If you see a pattern of symptoms connected to any of the drugs shown on the Torsades list, you need to find a physician or electrophysiologist who will take a serious look at the patterns. IF YOU ARE HAVING SEVERE CHEST PAINS, YOU SHOULD CALL 911 FOR IMMEDIATE MEDICAL HELP! DON'T WAIT OR HESITATE.
I cannot overemphasize how important this is.
Remember how I waited to use my nitro spray because I wanted to get a good recording of the attack on the holter monitor I was wearing? I waited too long and went into fibrillation and sudden cardiac death. I was lucky someone was there to call 911. I was not able to reach for a phone less than 4 inches from my hand. I was also lucky that the paramedics were only 3 minutes away. 10 minutes would have meant brain death. My survival for all of those previous years was solely due to the sublingual nitroglycerin spray I insisted on having since 1992 even though the doctors did not see the necessity for it. The same for my Imdur medication I had insisted on taking since 1998 which is a long acting nitrate. Nitrates counteracted the Torsades effect reaction to the offending medications during each attack except for that one time I held off and fibrillation began. Nitro will not help after fibrillation begins. You will know you are in fibrillation when you suddenly cannot breathe and start gasping for air. That means your heart is not pumping blood and you are in immediate need for CPR and defibrillation. Make sure someone in your home knows how and when to perform CPR. This will keep oxygen flowing to the brain until paramedics arrive and prevent brain damage if performed properly and there are no obstructive or hemorrhagic problems preventing blood flow from reaching the brain.
It takes a very special doctor to stick with problems which are difficult to diagnose. Sometimes you have to keep changing doctors until you find the right one, especially if you have rare disorders which are not easily diagnosed. If your physician rolls their eyes or tells you your problems are stress or psychosomatic related, you might want to find a new physician who will take a fresh serious look at the issues. Some of the symptoms of a Torsades reaction to medication also feel like a panic or anxiety attack. This is especially true with injected or IV administered Torsades drugs, so your problems may be related to a medication you are taking. Be sure to check the medicines listed on this website and see if you are taking any of these drugs.
If necessary, go to an adjacent town or suburb for another doctor or second opinion because there tend to be GOB cliques of Doctors in each area. Many play golf together. Some areas are worse than others. A nurse advised me about this and I found she was correct. Doctors won't step on the toes of another doctor in their area and tend to not say anything that would conflict with the other doctors assessment.
Your medical insurance company or policy may also be interfering with the level of medical care you are receiving. Each type of coverage can restrict Doctors from telling you about available tests and treatments. Doctors have to sign contracts with the medical insurance plans they honor. Those contracts can be extremely restrictive in the medical care you can receive. I have a copy of a letter one of my former medical insurance providers sent to my doctor telling him they did not agree with the medication and dosage he had prescribed and then it went on to tell him what he could prescribe and at what dosage.... so be forewarned. HMO's, POS, Medicare, Medicaid and other managed care systems are the worst. The doctors are held hostage by the medical insurance companies. I have had several doctors severe their relationship with some medical insurance companies over their interference and demands. One of my physicians actually quit practicing medicine because an HMO was telling him how long he could spend with each patient (no more than 15 minutes) and limiting the treatments, diagnostics and medications he could prescribe. He refused to treat his patients like that and quit medicine. After a year, he opened a new practice and no longer signs Agreements with these types of carriers. However, he had originally signed on with all of the insurance companies to make it easier on his patients so he could bill directly and his patients would benefit. He is a truly honest and caring physician who was not prepared for the evils of medical insurance.
Physicians also make mistakes. They are not infallible. Some are worse than others. Most of the time it is an honest, human mistake but there are a few bad apples in every barrel in every profession. Even an honest mistake could be significant. You will have to make the decisions best for your health care. If your doctor is not addressing your needs to your satisfaction, go to another doctor, preferably in a different town or suburb so you won't run into a "good ole boy" buddy. Go to as many doctors as you need to address your medical problems. It took 45 years for the doctors to learn I had Torsades. I had to die while wearing a Holter Monitor I insisted on wearing, to prove it. During those 45 years, I moved several times and had more than a hundred doctors and specialists who did not find my Torsades. Only my insistence on having Nitroglycerin products saved my life a hundred times over until I could prove I had a serious medical condition.
Undiagnosed Torsades patients become very tired and defensive toward doctors who roll their eyes and make condescending suggestions for antidepressants, counseling, St John's Wart or accusations of being a hypochondriac or histrionic. Just because a doctor tells you they are familiar with Torsades... does not mean they know anything about it beyond the fact that it entails sudden cardiac death. I have had more than one doctor or surgeon since I had my Torsades diagnosed in 2001, which tried to force anesthesias or medications upon me, despite the fact that I clearly told them those drugs would cause a Torsades sudden death event. I had one oral surgeon just a few months ago who wanted to use an anesthesia cocktail of 8 drugs. Propoful, morphine, Ketamine (an animal anesthesia), sodium pentathol (also known as truth serum) and 4 others. The Propoful would have been more than adequate by itself. I did not go back to this oral surgeon nor allow her to perform any surgeries.
Do not let any doctor bully or intimidate you into taking a medicine which could be harmful or deadly for you.
Don't let friends or family members bully or intimidate you either. Stand up for yourself. Don't be afraid to tell someone NO. Go to a different doctor. I had dozens of specialists before I found the right ones.
I have been known, more than once, to fire anesthesiologists within moments of surgery who were not trained on Torsades or who tried to force unsafe drugs pr unsafe practices against my wishes. Fortunately, my doctors were understanding enough to find replacement anesthesiologists on short notice. I now know which anesthesiologists are experienced and can be trusted, so several days before any surgery, I request them by name and then call the anesthesia group to ensure that anesthesiologist is scheduled for me and talk to that anesthesiologist on the phone. Don't wait until the night before. Don't take for granted that the anesthesia group won't make a substitution for the one you requested. I've been through that situation many times where I requested a specific anesthesiologist and they substituted another. I also thoroughly question any doctor, surgeon or anesthesiologist on their knowledge of Torsades. I never assume. I always make certain. By being educated on your medical condition, you can help avert avoidable problems.
In a surgery using electrocautery, it is a worse situation because the defibrillator has to be temporarily disabled because it can mistake the electrocautery as fibrillation. The best method is to obtain a defibrillator magnet from your electrocardiologist which can simply be taped across your defibrillator during surgery to disable the defibrillator function. It will not interfere with pacing. In the event your defibrillator is needed during surgery, the doctor only has to remove the magnet and the defibrillator will function as needed. I have my own magnet with my name on it and I make sure I get the magnet returned to me after the surgery.
Save yourself the wasted frustration of going from doctor to doctor by finding an electrophysiologist who is experienced in treating Torsades patients. There are not very many but they also know who would be closest to your location.
Dr Amer Suleman in McKinney, TX can help find an electrophysiologist in your area if you are unable to find one. He is the foremost expert in Torsades in the US. Be sure to have full cardiac workup before going to the electrophysiologist to make sure you do not have any other cardiac problems. However, remember that you may also have other problems in addition to Torsades and if you have already had cardiac muscle damage from a heart attack, damage to your heart muscle can also occur as a result of a sudden cardiac death from Torsades. If a doctor is telling you about coronary artery spasms or unexplained (idiopathic) onset of fibrillation.... go see an electrophysiologist because your problem has not been properly assessed if that is the diagnosis.
Few cardiologists are experienced with Torsades and it is nearly impossible to diagnose. The only time the Torsades signature rhythm occurs is at the moment of death. Not all electrophysiologists are good with Torsades either. Try to find the best one in your area. Go to a second one if you are still having problems without a diagnosis or as many doctors as you need.
Always obtain copies of all of your medical tests and labwork. You will be amazed at what your doctor failed to mention on your test results. Perhaps they did not feel the results to be significant enough to mention, but you should have a copy so you can read the results for yourself and have them available for any other doctors or specialists you see. More than once, I have seen patients who are stunned to learn about problems they were never informed about after reading their medical test results for the first time. Sometimes you may have to be insistent. Especially if you give the physician the impression it is not a big issue. And doctors, labs, radiology facilities, etc., can now destroy your records after 7 years so if you don't get them before the 7 year timespan, you will not be able to in the future.
One of my family members did this. He mentioned problems to his physician and when the physician did not follow through, he did not mention his problems again, assuming they were not important. The problems were significant enough (syncope and rales) that I went with him to the doctor and became involved in a battle over his needing diagnostic tests. His doctor was clearly offended by my interference and the disagreement became heated. The doctor finally relented by sending him to a cardiologist for tests. Although my family member was clearly embarrassed by the heated disagreement at the time, because he had always been submissive with his doctor and assumed if his doctor did not take action, the problem must not be important.... his attitude reversed 180 degrees after my family member's tests showed he had a serious blockage in a major coronary artery known to cause sudden death in males. After that incident, he obtained copies of his medical records and was shocked at the test results he had never been told about.
I hope to be able to provide a link to a list of doctors with Torsades experience in the near future.