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|Torsades de Pointes|
Prolonged Q-T Syndrome
|What you and your doctor should know|
updated Sep 18, 2017
|Beware of Hydralazine & Zomig.|
|You need to
learn more about Torsades if you have ever had:
If anyone tells you it is psychological, in your head or imagination, FIRE that doctor & distance yourself from the friend or family member. Your life could be at risk. An electrophysiologist (electro-cardiologist) specializes in electrical abnormalities of the heart. They can provide a 30 day cardiac event monitor & other devices to find the problem.
ER & doctors Emergency info:
I am a Torsades index patient. I have been tested by every diagnostic method devised for Torsades. None worked except my holter monitor recording of my fatal Torsades attack to prove my condition & using nitro as a way to ward off attacks. Plus my subsequent AICD.
Right now your ER software says to treat a Torsades event with Magnesium. This wont work unless the patient actually has low magnesium levels. This is not what causes Torsades attacks. It is caused by certain drugs which the patient has taken within the past 24+ hours. Perhaps 48. Drugs are the catalyst to a Torsades episode. Torsades Drug lists.
Nitro is the best way to stop a Torsades episode. It kept me alive for 25 years. One or two sublingual sprays under the tongue are sufficient when symptoms first appear. No more than 3 sprays. Any more could drop blood pressure & stroke patient.
In my case, Zomig as well as Hydralazine caused severe Torsades attacks. Zomig literally killed me & I had to be resuscitated. I barely stopped the Hydralazine with Nitro as my heart reached 171 bpm. My defibrillator is set for 215 BPM at my request over 14 years ago because it was initially set at 150 bpm then. I understand 215 bpm has now become the standard setting for everyone. St Jude is the best AICD.
The only way I know to stop a Torsades attack is with nitroglycerine BEFORE the heart goes into fibrillation. Nitro wont work after fib begins. The patient usually gets a warning which feels like burning in the center of the chest at the onset of a Torsades episode & rising into the throat. Very similar to intense acid reflux. They have about 60 seconds to use the nitro to stop the attack.
Nitro kept me alive for 25 years while my doctors failed to believe I had a problem. I had to die wearing a holter monitor (which I demanded) to prove it. Shame on them for not listening. You can view that recorded holter monitor fatal Torsades episode on the link button above. Feel free to download, copy & share. Just ensure it is credited to Midge & this website. Not for sale or books or commercial use without my consent. Educational & medical use is approved. Please do not put it on some junk page with swarms of advertising or slideshows where they have to keep clicking to proceed. This is a serious, life threatening condition & emergency access is imperative.
Sublingual nitro spray is better than pills because a patient can carry it in their pocket for years. Pills disintegrate after 6 months. The patient needs to carry nitro with them 24 hours a day. Even with a defibrillator, nitro is preferable to a shock. All patients should be instructed on the correct use of nitro & the imperative necessity to have immediate access to Nitro 24/7. And not to exceed dosages. More is not better. More than 3 sprays will drop blood pressure & possibly cause patient to stroke.
One or two sprays under the tongue is adequate & must be applied immediately when symptoms first occur. Nitro will not work once fibrillation occurs & you will die without immediate CPR & medical intervention with a defibrillator unless you have an implanted defibrillator.
This is why immediate use of Nitro is imperative & urgent upon the first symptoms of an impending Torsades attack. Symptoms of fibrillation are repeated deep gasps for air. Your heart is quivering & not pumping oxygen to your brain & body. You will die without immediate CPR, defibrillation & a manual heart punch by fist if necessary. Every minute is critical. Ensure your family & coworkers are CPR trained. Do not take no for an answer CPR must be mandatory & began immediately after calling 911. Once in fibrillation, you will not be able to pick up the phone or talk or move. It is like a dead battery when your heart isn't pumping. Only your eyes & hearing will function. As you lose oxygen, tunnel vision will occur. It will become smaller as oxygen grows lower. This is brain death occurring. Not the doorway to the after life. You only have about 10-15 minutes. If CPR is begun within 3-4 minutes, brain damage & heart damage can be avoided. Time is critical. I know this from personal experience. Paramedics, ER doctors, nurses & family members should be aware that patient can still see & hear after death for 20 minutes and be mindful of what they say.
You can also use Imdur (Isosorbid) but no more than 16 hours daily to prevent losing effectiveness. When you find the drug causing the attacks & discontinue it, the attacks will end. They are probably taking Hydralazine or some psychological or neurological drug.
Certain drugs like IV Vancomycin have caused mild but distressing cardiac reactions. When I take this drug & any other unknown drugs, I can prevent a torsades episode by taking Imdur, Benadryl & a beta blocker if necessary about 30 to 45 minutes before the questionable drug his been given. The patient should also be observed for the first half hour after administration has begun if Torsades is suspected and the drug withdrawn if the patient has cardiac issues. At the very least, by using Imdur or Nitro and Benadryl have eliminated the Torsades reaction in me. This allowed me to take needed antibiotics without a reaction when I had septicemia. These are my own discoveries since the medical Community was unable to help me & researchers are off on the wrong track. It certainly wont harm a patient to try nitro & benadryl unless contraindicated.
I have a list of Torsades drugs on this site. There may be newer drugs missing so I included a link to a list on another site. Each person is different. For instance, I can take Levaquin, Cipro, Diflucan & Bactrim. Others cannot. Try the nitro & benadryl (& a beta blocker). I use Bystolic 20 mg QD. It certainly cant hurt to try. Instruct the patient how to use sublingual nitro.
If the patient takes cortisones or has adrenal Insufficiency like me (Addisons): if their cortisone levels are low due to infection, stress, missed dose, it can cause arrhythmias & odd BP such as 137/107 and the legs get weak & rubbery. Hands begin to shake & feel sick all over, Short of breath & severely weak. Low levels of cortisone (cortisol) can also cause sudden increase in infections & septicemia. The arrhythmias can be misdiagnosed. I had this occur 2 weeks ago. Increasing cortisone stabilized the problems. Antibiotics cleared the infection. These are my issues but perhaps they may be helpful.
The ONLY anesthetic I allow used on me is Propoful (Diprivan). There are no after effects or drowsiness when it has been used on me. I also require any prospective anesthesiologist to have 10 years civilian experience & full knowledge of Torsades. Otherwise I will replace them. Even minutes before surgery. I require competent anesthesiologists. So check a few days in advance & talk to the anesthesiologist in case you decide to replace them.
I do not allow Versed, paralytics, Succynilcholine or Ketamine to be used on me. I always examine the surgical drug tray for the presence of unwanted drugs.
I don't permit Versed (the amnesia drug) because you can be awake & suffering from horrific surgical pain & not remember. If used on someone like me who has a photographic or Eidetic memory, those memories of the surgical nightmare can return in a few days. I had that happen from a bronchoscopy where you remember drowning from water & tubing in your lungs during the procedure while you were awake on Versed. Do not allow anyone to use this drug on you. It is not a necessity for any purpose.
I heard of another case where Versed & succinylcholine were used in a major surgery & the patient was awake with full feeling while they were cutting on her & unable to move or protest because of the paralytic. Insist on a qualified anesthesiologist instead of the doctor administering the surgical drugs because a doctor without anesthesia certification is limited on the drugs they can use for procedures. (Same with oral & cosmetic surgeons). Hence, the use of Versed. Always discuss this in advance so you aren't surprised. Never assume! Take control of your procedure & make sure they include clot prevention in recovery & up to 6 months thereafter.
No epinephrine in dental anesthesia. I would also avoid any amphetamines, stimulants & caffeine with Torsades. Just to be safe.
Dr Suleman is the best expert on Torsades I know. He is an electrophysiologist located in Mckinney, TX and Dallas, TX. He can test for electrical irregularities of the heart, provide home monitoring devices or help you find an expert in your area.
The methods & recommendations on this website are mine not his. These suggestions are based on my personal experiences & what works for me. Since I have Torsades and these methods such as Nitro, work for me many times over for nearly 40 years, I hope it will work for others as well.
I also recommend St Jude Defibrillator-pacemakers. Their quality is unsurpassed. Unlike other brands ( such as Medtronics, Boston Scientific) St Jude has not been recalled one tine in the past 17 years and 3 units I've had one. It is nothing to fear. The size of a half dollar & 1/4 inch thick. A plain pacemaker is about the size of a dime. It does not require open heart surgery. The leads (wires) are fished through a vein with a scope & sewn in place. The AICD unit is slipped under your chest skin like a pocket & stitched to the muscle & the skin is closed. They can program it wirelessly. You can even get one which can call for help. But I didn't want a cell phone in my chest.
It is imperative to ensure your doctor adheres to strict sterilized protocols in a pristine operating room. A friend of mine in Ft Lauderdale had to have his replaced 3 times in 3 months because his heart &unit were infected with staph bacteria. I pleaded with him to replace the doctor. He wouldn't listen and went through another operation & another on the opposite side by the same quack. A teaching doctor who clearly failed to learn sterilization procedures 101. Even after he screwed up he did not learn. Nor did the patient. I fired my first surgeon, for other reasons.
I was so appalled by local hospitals filthy operating rooms that my surgeon replaced my unit in the Dallas Medical center transplant room. Now that was immaculately clean & their procedures & protective gear were impeccable.
It is just a quick operation to slip the unit out of its skin pocket & replace it with another. Maybe 15 to 20 minutes. It could be done in an office if not for the need to be absolutely sterile & have an anesthesiologist.
I was also concerned about the testing of the defib shock during the procedure. I had a bad premonition. So my doctor honored my concerns & skipped the shock test. I appreciated it very much. I don't have many premonitions, maybe once every 5 years, but they always come true.
|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 25 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 spraying 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. You only have about 60 seconds after you feel the onset of a burning sensation in the center of your chest. Similar to acid reflux but this tends to spread upwards into your throat. There was no question what it was but even if someone is wrong, the nitro wouldn't cause harm if used correctly unless the person has very low blood pressure or other Contraindications. Nitro will also cause a significant headache. However, your doctor should know if you have problems which would be affected by the nitro. You can research the contraindications online.
Any hesitation in using the nitro can allow the heart to go into fibrillation. Once fibrillation begins, the nitro will not stop it. You will know you are fibrillating when you begin deeply gasping for air because you are not getting oxygen. 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. Once you have gone 15 to 20 minutes without oxygen & blood pumping, rigor mortis will begin to set in & there is no recovering from that.
I hope everyone will insist all members of your home to learn CPR. Call the Red Cross for a class. It is only a few hours. Learn to do a heart punch as well.
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. Or if someone performs a heart punch with their fist to restart your heart as they did for me. 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.
The majority of doctors & nurses are unfamiliar with Torsades or incorrect in their assumptions. Some are terrified of Torsades patients while others are careless & flippant or dismissive. Their Emergency Room software tells then to use magnesium to treat torsades episodes. This is incorrect except for someone with truly low magnesium levels. Low Magnesium is not the cause of Torsades episodes. Using the wrong drug is what causes a Torsades attack. Such as Hydralazine or Zomig.
I had a nurse start injecting Hydralazine into my IV at the hospital without checking my chart or informing me prior to injecting which is my #1 rule. I demanded to know what it was. The minute she said Hydralazine, I jerked the syringe out of the IV, blocked & drained the IV tube & had her draw a syringe full of blood from the IV to attempt to retrieve what she had injected. There wasn't a moment to waste to stop any more of the drug from entering my bloodstream.
This is exactly why I wont allow them to install a Picc line into my heart. I can't think of anything worse than feeding questionable drugs directly into the heart of a Torsades patient. No picc lines. Use regular IV in arm. People have died after the hospital removed a Picc line which allowed air into the heart. In the hospital. The wrong drug in a picc line of a Torsades patient would cause instant death before you could get to your Nitro spray. A regular IV gives you those extra seconds to react.
I immediately used nitro spray during this incident to prevent a Torsades episode because they had failed to give me the Imdur or benadryl or Bystolic which would have protected me from their blunder & reduced my blood pressure as well. Fortunately, she had only started injecting when I stopped her. I was successful in preventing the attack. The nurse had the audacity of claiming I was overreacting after she nearly killed me. I had been requesting my BP meds for 4 days. My BP would not have been so high if I had received them. I had already replaced the first doctor. Both the doctor & nurse were negligent by not reading my chart & giving me a medicine which nearly killed me last year. Even with a defibrillator, there is always a chance your heart wont restart. This was inexcusable. They didn't even apologize or regret the deadly mistake & acted like it was my fault. Her snippy condescending attitude convinced me I was not safe. I immediately packed my bag & left the hospital before someone killed me. I told them exactly that. My regular doctors wholeheartedly agreed. I wont ever darken that hospitals door again. It was not the first incident there. There are plenty others when I left or fired the assigned hospital doctor. But there is a sad lack of competent doctors.
The hospitals, doctors & nurses need to be better informed and they need to listen to the patients. No one knows this condition better than an engineer who has battled it for decades & survived. I know 3 of us. I also live alone in the rural country with scarce neighbors. I have nearly 40 years of experience & research with this condition.
|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 accurate
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
I doubt you will find better info elsewhere certainly not as
medical advice & treatment from a qualified physician.
You should call 911 or contact your doctor if you are experiencing severe medical problems or any kind of chest pain.
|My holter monitor recordings,
images, medical reports and other info are for educational & medical
uses as a guide. The info is from my personal experience with
Torsades. This is an informational tool to educate the medical
community, medical schools, Hospitals, researchers & patients about
Torsades. I hope the info will help others get proper diagnoses &
You may copy, share & use the images & info to teach or use as a guide for Hospitals, doctors, treatment, drug lists, patient info, etc., as long as you credit Midge & this website. I take a dim view of someone else taking credit for my efforts. Especially when I died for it.
This info may not be used for profit or in books, publications, commercial use or altered content or negative purposes without my express permission. I retain all copyright rights.
If any info is inaccurate, let me know & I will correct it; IF I agree. However, I have not seen one source yet which is accurate on Torsades. I have a lifetime of experience with Torsades. The most shocking is the erroneous Hospital ER software treatment guide for Torsades. I will not put inaccurate info on this site. I want to help others. Not lie to them.
This website info & images are from my personal experiences & intended solely as an informational & educational tool or guide. I am not a doctor. It is not intended as authoritative medical advice. The info is what works for me. Each patient is different and has different reactions. This info from my experience, reactions, opinions & methods can be used to compare with other patient reactions, symptoms & experiences to develop better tools to recognize patients with Torsades & devise better treatments. I recognized symptoms in many people whom had undiagnosed Torsades & referred them to a qualified electrophysiologist for authoritative medical advice. Hopefully, the symptoms I recognize can teach others how to identify Torsades so no one else has to die wearing a holter monitor to prove it like I did.
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