HEART DISEASE EXPERT FORUM
Possible Long QT or CAS

Possible Long QT or CAS

I am a male 43 years old and have a family history that is Long QT positive. My mother has been diagnosed with it and I have a brother who also has been tested. His QT .440, His daughter who is part of the registry at U of Rochester, QT is .471. She's only 7. Now to my problem, I have been having chest discomfort for about 3 years now. My primary doctor sent me to a cardiologist last summer, where in turn I failed my stress test. They put me in the hospital and did an angiogram which revealed nothing wrong with my arteries. The doctor put me on beta-blockers as a precausion. Then this past february I had a blackout. I was taken off the beta blockers at the hospital because my heart rate was dropping below 40 bpm. I also had episodes while there where my heart rate would jump above 140 bpm and then suddenly return to my norm of 80 bpm.I have been in for large amounts of tests that don't seem to prove anything. I have had 2 more black-outs since. I am back on the beta-blockers but I am still having episodes where my heart will race and/or slow excessively. My cardiologist has now put in an implant (Medtronic Reveal ILR). I am still at wits end because my episodes come unexpectively and had been recurring at greater intervals. It used to happen every couple of weeks with no discernable triggers. Now they are happining about 5 or 6 times a month. My employer sends me home every time I have an episode because they can last hours. By the way my QT is .493 with the beta-blocker regimen. My doctor says thats ok. It's low. I am looking for guidance in what to do. Very Frustrating.
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Bowquiver,

Thanks for the post.

The Reveal is certainly the right thing to do.  I must be missing something, though.  If the reveal is in place, and you are having episodes once per week, on average, then you should already have a diagnosis.  The Reveal auto-activates for slow or fast heart rates.  Alternatively, if you are having episodes, then you can activate the Reveal.

The other important point is that someone with a family history of Long QT syndrome who is now having passing out spells needs expert guidance at a large center.  If your other family members are seeing doctors at Univ. of Rochester, then that might be a good start.  The passing out spells could be indicative of dangerous arrhythmias -- but again, why has the Reveal not shown these?

Good luck.
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On the Reveal the setting my doctor has set it to are a high of 165 and a low of 40. When these episodes happen now my heart rate does not seem to reach these limits. The doctor then tells me he thinks it may be related to blood pressure. Usually when I have my pulse taken by the nurse at work she also takes my blood pressure. Which is normally in the acceptable ranges. Today for instance at medical my heart rate was 52 average over a 5 minute period. Blood pressure was 132/82. Yesterday in medical at work around noon my pulse was 120 average for a 5 min period and my pressure was 122/93. Both of these situations were when I was in a relaxed sitting position.
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