Torsades de Pointes

Prolonged  Q-T Syndrome


An  unrelated clot  & chronic infection mystery Inquiry

 Surviving Torsades Sudden Cardiac Death

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My surviving a Torsades Sudden Cardiac Death:

For 45 years, dozens of physicians and cardiac specialists across the US were unable to diagnose my unusual and recurring symptoms. I had atypical and paradoxical reactions and allergies to dozens of medications, which could not be explained. I had recurring and increasingly unbearable chest pains at varying unpredictable intervals. I had an extremely low heart rate in the evenings, which never occurred during a routine EKG so I dismissed the slow heart rate as unimportant. Prior to age 40, my blood pressure was also unusually low, but at the time, I thought it was a benefit to my health.

As I continued to complain about intermittent and intensely painful episodes of chest pains and unexplained episodes of shortness of breath, various doctors and specialists performed every diagnostic test imaginable, a multitude of times over the years. My EKGís were always normal as were my echocardiograms, nuclear stress tests, CT and MRI scans. Holter monitor did not reveal any signs of problemsÖ of course the chest pain episodes never seemed to occur during the 24 hour period I was wearing a monitor. No signs of any defects, arrhythmias or structural abnormalities were detected.  

I was sent to multiple other specialists to check other possibilities such as gastrointestinal, pulmonary, etc. About 15 years earlier, when the chest pains first started, my physicians humored my request for sublingual nitro spray, which seemed to stop these episodes of chest pain. My physicians assumed the benefit I was receiving from the nitro spray was related to relieving esophageal spasms. Three years prior to my sudden cardiac death, I also noticed the nitro was relieving unexplained episodes of shortness of breath so my request of Imdur for a more prolonged benefit was also humored.  

At the time, I did not realize that the nitrates were keeping me alive. I only knew they were helping the problem and by this time, my blood pressure was consistently high and under treatment so the nitrates did not pose a risk in that respect. Emergency room visits following the onset of the chest pain episode also resulting in no findings. Enzyme levels, which typically elevate following a heart attack were perfectly normal, including a subsequent enzyme level repeated 8 hours later. At the conclusion of each ER visit, the attending physicians would roll their eyes and make comments about stress and anxiety of which I had none other than my frustration at not finding the cause of this problem. Thus, I stopped going to the emergency rooms when these violent episodes occurred and relied on the nitro to end the event.  

Two separate heart catheterization procedures revealed perfectly clean arteries. At the age of 45 (a vegetarian since 1999), I was told by one cardiologist that my heart and arteries were healthier and cleaner than the doctor had seen on teenagers. Both cardiologists who performed the heart catheter exams were very condescending and sarcastic about the validity of my symptoms and suggested I should take medications for stress. The cardiologist who performed my heart catheterization exam 10 days prior to my sudden cardiac death told me I had an extremely low chance of having a heart attack no additional tests were necessary.  

At this point, I proposed a final request and insisted on wearing a Holter Monitor to capture one of these attacks of chest pain (which I had been suffering from 2-3 times a week for 3 years) and promised I would never complain about the chest pains again, if the holter monitor results were negative. He agreed and also humored another request by providing extra cassettes, leads and batteries so I could continue the holter monitor beyond 24 hours until I could capture one of these episodes on tape. I also asked him about the possibility of the chest pain episodes being related to Zomig, the migraine medication I was taking at the time. He told no, but if I was concerned about Zomig, I should go ahead and take it while wearing the holter monitor.  

Sudden Cardiac Death:

Ten days after that last heart catheterization exam in May 2001, I started the holter monitor recording at noon and took one 5mg Zomig with no other medications. At 8PM, I took a second 5mg Zomig. Although I was not having symptoms, after midnight, the holter monitor recorded my heart rate as low as 42 bpm. Early the following morning, I felt the onset of the all to familiar deeply intense burning pain rising from the center of my chest upward into my throat. I refrained from using my sublingual nitro spray as I had previously done to curtail all of the previous episodes. Since it was my last chance to record one of these attacks to show my physicians the chest pain episodes, I wanted to be certain the holter monitor recorded the entire event. This was a fatal mistake! By withholding the nitro nor taking any Imdur, I allowed the episode to progress into crushing pain and full fibrillation upon which I began gasping deeply & repeatedly for air like a fish out of water. It feels like drowning. The lack of oxygen completely overpowered the crushing pain. Trying to breathe was my number one focus. Once fibrillation occurred, the nitro was useless when I tried to use it to stop the attack. At this point, I was unable to reach for the phone, which was less than 4 inches from my hand. Fortuitously, my spouse immediately called 911. (note: the actual holter monitor recording is posted on this website).

Resuscitative Efforts:

Fortunately, the paramedics were only a few blocks away. Both fire and civilian EMTís arrived with two ambulance crews within 3 minutes. I was still having autonomic gasping for air when they arrived. I could see and hear everything that was said and occurring but was unable to speak or move.  It is like a battery running down with just enough power left for sight and hearing but nothing else. According to the holter monitor, my heart had stopped circulating blood 7 minutes prior to the start of CPR efforts, which also continued to record on the monitor. CPR was performed on the run, wheeling me out to the ambulance, which was about 1 minute. After placing me in the ambulance and removing my buttons, they saw and removed the holter monitor leads in order to place the defibrillator paddles on my chest. I saw and felt the cold paddles but apparently blanked out at the moment of the shock. A minute or two later, I woke up to see some extremely pale and shaken EMTís and thanked them because I was able to breathe much better. Then I noticed the fist impression on my chest and started asking the EMTís about the technical aspects of the joules and heart punch involved. Foremost on my mind, I made certain my holter monitor did not leave my sight since it was my only source of proof and this was not an experience I wished to repeat. Despite my calm chatting about the details, these paramedics looked absolutely terrified as they urgently sped toward the hospital. You would have thought I was dying?  

Since I had quickly recovered from previous cardiac episodes, I was not concerned at that point. I was instead ďdecidedly contentĒ that I had finally captured one of these terrible attacks on the holter monitor so I could prove to my doctors that I had been telling the truth all along. I held onto that monitor like a hermit crab because I was determined not to lose my only proof. However, my calm demeanor was about to abruptly change. 

One side note I wish to express to all physicians is to make certain that all of you realize a patient can still see and hear everything you do and say for at least 10 minutes after the heart stops circulating blood. The patient wonít have enough oxygen to physically or verbally respond but much like a low battery, there is still enough power left for sight and sound. I have a clear memory of the entire event and recounted it accurately back to the EMTís who were stunned to learn this. I mention this because although the patient may appear dead and unresponsive, you should remember that they can continue to consciously hear and see everything around them even though the eyesight will start to close in similar to tunnel vision and a drowsy feeling will increase as the oxygen levels decrease. It is this tunnel vision effect which SDE patients confuse as tunnels with a light at the end. They donít realize it is the mechanics of depleting oxygen to the brain. So remember, if you are unable to resuscitate a patient and their brain is still conscious, think of how you would feel if the doctor or medical team gave up too soon or how it would feel to hear someone call time of death. So be considerate of what you say and do because it will probably be the last thing your patient hears as they realize their consciousness and life is about to permanently end.

Post resuscitation:

Upon being placed into the hospital emergency room, hooked up to a heart monitor and IV, then battling to keep my holter monitor from being taken away, I saw my EKG for the first time. This was the most terrible, abnormal EKG I had ever seen. It was so terrible and distorted, it did not look resemble any heart beat. That is the point where absolute fear set in for the first time and worse was the fact that the attending nurses intended to leave me alone in that room with a closed door, no phone, no emergency button to push for help and once alone, there would be no one to help or hear me since I was nowhere near the nursing station. Needless to say, they had to find someone to stay in the room to alleviate my concerns until they moved me up to the intensive care ward.

Post Torsades Sudden Cardiac Death test Results:

Upon the arrival of a young doctor from my cardiology group, I relinquished the holter monitor into his care. He explained to me that it would take a day or two for my heart to settle back into a normal rhythm following such a traumatic event. The explanation and the level of patient monitoring in the critical care ward helped to ease these concerns.  

Much to the surprise of the cardiologists, there were no elevations of the cardiac enzyme levels and subsequent tests following this sudden cardiac death. Echocardiograms showed normal with no damage. CT and MRI scans showed no damage to any portion of the heart or heart muscle. EKG returned to perfectly normal as if the entire event never occurred. Only the Holter monitor remained to tell the entire story and the results were completely unexpected from what was known about this condition up to that point. 

At the beginning of the sudden death episode, complete heart block occurred, followed by A-fib, V-fib, flat line and finally, in the last few seconds, the unmistakable telltale signature of Torsades de Pointes. (the medical community insists it is not labeled as an attack unless cardiac muscle damage occurs. I beg to differ. There is no difference in pain levels or excruciating symptoms between a typical heart attack and a Torsades sudden cardiac death episode.) At that point, they informed me I could not leave the hospital until a defibrillator/pacemaker (AICD) was implanted. I had no problem with that. I was glad to have a backup system installed, especially after I learned it was a simple procedure and did not require major open heart surgery. As an engineer, I considered myself lucky to have the equivalent of a battery back up system. Just prior to the implant surgery, an MRI scan of the heart was performed. During the implant procedure, an electrical conduction test of the heart was performed via a heart catheter procedure. It was thought at the time, this type of test would confirm the presence of Torsades, but the test failed to produce any results. I wanted to mention this in case another physician is considering this procedure to diagnose Torsades.

I spent 11 days in the hospital, sitting up working on my computer and remotely managing my job from the hospital room as dozens of doctors dropped in to visit because they had all heard about the event. Since then it made my life a lot easier when I had other medical problems because I no longer had to deal with doctors rolling their eyes and telling me it was stress related. My medical concerns are always addressed, even those that were difficult to diagnose. We eventually find the source of the problem.  

Just recently, while running diagnostic tests and CT scans for hypostatic intolerance, we discovered I had incurred a bilateral, frontal lobe water shed type stroke (ischemic damage, not severe), which apparently occurred during the 2001 sudden cardiac death during the 7 minutes when my heart was not circulating. I had an earlier MRI of the brain in 1998, which showed no existing problems at that time so we had a timeline to work with. My team of physicians and I were all astounded since I did not have any symptoms of ischemic damage to the brain. I consider myself lucky to have escaped without problems normally associated with lack of oxygen to the brain for such a long period. In my case, the holter monitor recording also provided details where the time periods without oxygen can be measured.

Choice of Electrophysiologist:

My first electrophysiologist was not a good choice. The followup was almost nonexistent. He never showed up for appointments and had an office scheduling assistant take care of the patients. After the 1st appointment a week after the implantation of the first AICD which was also handled by the office assistant, the appointments were set up for once a year. I never saw this electrophysiologist at any appointment after leaving the hospital. Only his office assistant who was neither a doctor or nurse attended the patients at office visits. 

About a year later, I thought I had pulled an AICD wire loose on the job and requested a chest x-ray. Without seeing me, he refused to order an x-ray and I was told over the phone I did not need to be checked. I expressed that it was irresponsible not to check and subsequently went to a pulmonologist with an x-ray unit in his office who was happy to oblige. Needless to say, I never returned to that electrophysiologist. 

A year later I found a new electrophysiologist who is excellent and very experienced with Torsades. On the first visit, he found most of the settings on my AICD were incorrect for Torsades and spent a long time reprogramming all of the settings.  One example was the minimum pace heart rate setting had been left at 50 bmp by the previous physician and was allowing a heart rate drop out. This is important because a Torsades patient also is a prolonged Q-T syndrome and intermittent periods of extremely low heart rate. I am on my  third AICD now, a St Jude device which has never given me a moment of trouble. I highly recommend this brand as extremely reliable. 

My current electrophysiologist is a well known expert in Torsades and has been proactive in my continuing care as has my cardiologist who I continue to see for regular cardiovascular diagnostics. My appointments with my electrophysiologist are no less than 4 months apart. The difference between my current physician and the original electrophysiologist is like night and day. I learned there is indeed a difference in the competency levels between electrophysiologists and their knowledge with Torsades. I mention these issues in the event another patient encounters problems like I had with the first one and to encourage patients not to be afraid to change electrophysiologist or cardiologists, which may not be addressing their problems. I also wanted to present this as an example to other physicians who do referrals to make sure the electrophysiologist is an expert in the field of Torsades de Pointes and prolonged Q-T syndrome. Since this is a life and death condition, the patient should be fully informed on all the nuances of drugs which trigger Torsades and become actively involved in their continuing medical care. Each Torsades patient should also know how to check and verify every medication by looking at the Torsades Drug lists prior to taken any medication. An informed Torsades patient can save a lot of wear and tear on their physicians by becoming familiar with which medicines they can safely take.

An unrelated clot mystery:

I have twice developed serious clots two months after a tooth removal. The second time I was treated with Lovamox & Warfarin before & after the extraction & still developed a clot in my lower back which went to my lung. I had been in excruciating pain in my lower back for 2 months until the clot moved to my lung. I actually increased my Imdur dose from 30 to 60 to try to get it to move from my back to stop the pain. It worked. It moved to my lung. The ER could not use contrast because my kidneys were failing from the septicemia. But a regular chest Xray showed the PE. 

If any doctor reading this has an idea what is causing these clots to form in my back & chronic infections which don't show up on scans but cause kidney failure each time (GFR 33) until treated with antibiotics (GFR 91), I would love to know. WBC 28, Lactic acid 4.7 The previous septicemia in 2013 was WBC 40. Clots in both knees  last year. I have Reiters syndrome & Addisons among other issues. I have an overactive immune system. No diminished immune or impairments. I try to keep from bending knees, etc or impairing blood flow. I also try to keep hydrated. The cortisones are likely masking the infection from scans. Aspirin dissolved the PE in the ER but my hematologist was not happy due to the Warfarin. Another clot tried to develop a week later but 2 baby aspirin for 3 days removed it. All the clots are currently gone. The last 2 were 6 weeks ago. The baby aspirin was vehemently protested by the hematologist but approved by my primary doctor who cautioned about bleeding. The baby aspirin eliminated the clot in 3 days just in time when minor bleeding occurred & was discontinued.  

The primary issue was getting rid of a clot. My nurse friend & I have a saying. It's better to bleed than clot because blood can be replaced. A clot can damage or kill you. Keep in mind, this was done with doctors supervision. Hospitals also have TPA to dissolve clots. I don't smoke or do anything to cause clots & my PT INR levels are between 2 and 3 so we don't understand why clots are occurring in my low back after tooth extraction & moving up to my right lung. 

 Chronology: The  back pain started 2 weeks after the extraction despite Lovamox to Warfarin under the guidance of the hematologist from before each extraction.  I developed a severe gum infection from the extractions. My lower back & right kidney were excruciatingly painful for 2 months then I developed an appendix infection. The antibiotics didn't work & I developed septicemia. The same day I felt the clot move up to my lung & was gasping for air like fib symptoms. I was told feeling a clot move wasn't possible... but it was. We have an Xray of it. The second PE in 2 years. & nearly a 3rd time a week later but I caught it  with baby aspirin. 

The back pain also disappeared when the clot moved.  No one  believed it was a clot as I insisted for 2 months until it moved into my lung. I also developed cortisol withdrawal the same day.  A PE, septicemia & cortisol withdrawal all at the same time. Plus some effusion in the lung near the PE. The ER was great but the hospital doctor did not treat my PE or order any tests. No antibiotics for the septicemia despite my objections, 10 mg increase in my hydrocortisone. 

Then they kept injecting me with Humalog insulin 15 units every hour despite my telling them repeatedly, I am insulin resistant. 

Just 3 units causes my glucose to rise 100 points each time. My primary doctor didn't believe it last year until I had him inject me in his office & run the tests. He couldn't believe it. But he saw my glucose rise 100 points himself with no food or drink for hours. But the hospital doctor kept injecting me hourly with 15 units humalog on top of my50 units long acting Lantus & my glucose was nearly 500, so he blamed the skim milk I drink. I cannot drink or eat artificial sweeteners due to severe allergy to them. My WBC was still 27 after 30 hours in the hospital without Antibiotics. 

That was the last straw & I left the hospital before he killed me with insulin & no antibiotics for the septicemia. The whole aspirin they gave me in the ER had fixed the PE. I went home where I had antibiotics & milk. I drank a half gallon skim milk over 12 hours at home and my glucose without the insulin was only 89. It wasn't the milk as I had said. It was the Humalog insulin causing the glucose elevations. I got the septicemia under control with my antibiotics my doctor prescribed & my glucose was great. He agreed with my leaving the hospital. He would have done the same.

I understand the extractions were the clot catalysts but why the lower back & kidney? Especially on warfarin. Why are the kidneys failing during each infection but rally after antibiotic treatment? Which also requires 3 antibiotics to cure each time. But no infections appear on CT scans. The low back pain began two weeks after the teeth extractions which also developed a bad gum infection.  2 months later an appendix infection developed & despite antibiotics became septic, the kidneys were failing and the PE occurred the same day.  Also the cortisol withdrawal despite taking my regular doses. My adrenal issues are still not properly attended or understood.  My nephrologist hasn't a clue about my kidneys. They had failed last year (33) but when I got suspicious of Metformin & stopped it, my kidneys rebounded 7 days later to 76, three months later they were  GFR 91. Three weeks later Septicemia they were 32. One week after going home & taking antibiotics they were  GFR 54, WBC 12.5. I think these infections are tied to my kidneys & adrenal system.  I'm seeing a pattern But can't quite make sense of it.  I also get paradoxical reactions on most medicines.  Everything works backward on me. I often have to prove it like the insulin reaction.  It may sound crazy, but this is what it is. Try living with it.

I'm great with Torsades but lost with chronic infections, clots & adrenal issues. So if anyone can sort out this mess I would be grateful.  Use email address on main page.



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