Sudden Cardiac Death Survivor - Procainamide Challenge

[Pamz]

My sone has been scheduled for a Procainamide Challenge is?  I can't find much about it on the internet.  Has any one had this done?  Is it safe?

[Pamz]

The procanamide challenge didn't give them all they needed to find the gene but every test helped.  The Mayo ran my son thru a lot of tests and I also did a lot of tests and then they actually noticed a pattern in heart rythms between us on an ecg that seemed odd.  Then they did the genetic test using the long qt testing method on him because it is the same gene, just opposite spectrum, I guess is how you'd say that.
As for the icd firing, no warning whatsoever.  Just bam, feels like someone walked up behind you and hit you in the middle of the back as hard as they could.  I was mowing and it knocked me forward and I pushed the mower so hard I mowed down one of my small trees.  Each time it fired a little harder and I was trying to get to my house (no phone on me) and I hit the ground hard enough that I bruised my hands, wrist and knees.  My son's a bit stronger, doesn't always knock him down and good thing, he's usually jogging on pavement.

[tom_h]

After this thread resurfaced, I read your story, then went and read your personal page and the "about you" section.  While unable to offer any advice, I was fascinated the story about the gene in your family that was passed onto several family members.  It's amazing they can detect this now.  I've also learned that the Procainamide Challenge now has been replaced for the most part by other drugs that have much shorter half-lives.  That seems like it was a risky test.  Glad to hear everyone is alright today.  In the "old days", you'd sometimes know of a family where the members all died in their early years.  What you're speaking of could have been one of the causes.

I'm curious of what the ICD feels like when it goes off.  Does it give you any prior warning that you're about to get whalloped?

[Pamz]

Thanks for your suggestion.  Since 2009, it's been found that my son, daughter, mother, an aunt and I all have a defect at scn5a tyr 87 cys, which is previously unknown variant.  It's sort of like a short qt syndrome with rapid repolarization.  We have really low heart rates that rise suddenly with certain activities, foods or medicines.  Medicines that lower the heart rate are not good for us.  My heart rate was so low at night (29 at night, 35 during the day and I'm 50), the dr's were afraid I would stroke out while sleeping so I now have an icd also.  My daughter does too for safety.  My icd fired 6 times while jogging with my lawnmower, my heart rate hit 205 and I wasn't even breathing hard and the rythm was normal, so the dr's decided that the setting for the icd wasn't high enough for me and raising it some wouldn't be bad either.  It's now 210.  And, after testing my son, they decided to do the same to his.  So, now without medicine, he can jog again most of the time without getting shocked.  He has found, if he was drinking the night before, don't jog as well as other trigger things.  Basically, his icd firing has saved him a couple of times and other times it was just incidental.  

[ambiguousphoton]

Ask about being put on verapamil. I am 28 and have gone into afib a number of times and the only thing that stopped it for me was verapamil. It is a little less intense of a drug option than many of the beta blockers. Good luck!

[Pamz]

Well, it appears that taking metoporol a few hours before exercising doesn't work - his heart rate seems to be 145-150bpm for only a 1/4 hour of jogging (minor jogging, not pushing it to the extreme) and then, after that, it's all over the place, down to 100 back up to 175 and drops, just haywire.  I'm trying to talk him in using the medicine daily, just to give it a chance.

[PikaPika88]

Yeh, when my heart stops, the pacer will kick.  After few beats, it stopped.  The pacer kicked again..... it continues like that.  He didn't turn off my pacer.  He said he cannot turn it off that is why the pacer sit there for.

[Pamz]

The doctor did also say to stop the metoporol 1 day prior to the procainamide challenge.  I suppose the circumstances can dictate how you can start and stop the meds but I really know nothing about them.

Your heart stopped with a pacemaker?  Did they have it off or something for the test?

[PikaPika88]

I have a question about suddenly stopped the beta-blocker.  When I booked for the EP study, doc said stops the Kinidin and Inderal completely for 3 days before the studies.  It wasn't tapped off slowly.  It just stopped suddenly.  I saw many posts that when they went in for EP study also stopped but not tapped off slowly.  

During stress test, doc put me on the bed rest then my heart keeps stopping.  He diagnosed me Brugada variant.  I already have a pacemaker (no icd component) for wpw so they said nothing to be worried about.  Pacemaker will cover all the abnormal rhythms.

[Pamz]

Thanks for the info - will definitely check with insurance - never even thought about that part, just assumed covered like here in the states but, he's on his own insurance now starting back in January.  Will have to see what that all entails.

Thanks again

[Jerry_NJ]

It is always a good idea to know how to get medical attention when out of the country.  So, even more important than where the nearest hospital is, is how do you get service there?  What will they accept for payment is the main question.  

As you said, a tourist area deals a lot with non-Mexican citizens, and would, I think want to not loose any because of poor emergency medical services.  Check with your insurance company if you have one.

[Pamz]

Yes, he did tell Cory to take a baby aspirin every day.  He is giving him the metoporol to keep his heart rate low and only as needed, not his blood pressure.  His blood pressure is already fairly low, 100/50 to 110/60 or so. I thought it was funny that he said Cory could do that because I'd never heard of taking it when you wanted to before but, he is a very good cardiologist what I've heard.

We will not be able to take him to Mayo until late July or August because he needs to finish this semester of college and he's getting married the end of May.  It worries me that he will be in Mexico for 2 weeks for his honeymoon but, there is no changing his mind on that one and, it is a resort area, they should have a good hospital in the area (need to check on that).

Our daughter took an ekg and it was normal but I have told her to start taking the aspirin also since she seems to have atrial flutters.

Thanks for you answers.

Also, thanks to jsuter69 for offering an ear - I'll keep saying prayers for your two youngsters - I hope they are doing well.

[Jerry_NJ]

Sorry if my suggestion to Heart Disease didn't help, I didn't recognize the condition.

I will ad at this point, that I have been told many times that one should not suddenly stop taking a beta blocker, e.g., Metoprolol, but this many not apply until one takes it regularly for a period of time.  In low dose it may not matter either.  What's low dose?  I'd say 25 mg or less is low.  I take between 50 and 100 mg a day.  I think it is not addictive, other than at the dose level I take, I would need to tapper off before stopping, say 50 mg for a few days, then 25 mg for a few days, then stop.

Has your doctor recommended an aspirin therapy?  If you son is not on an anticoagulant (Coumadin/Warfarin) and his stomach can tolerate an aspirin once a day with a meal, it is a good added insurance against stroke (blood clots) and other heart related problems.  I take both aspirin and warfarin myself, per doctor's orders.  

[jsuter69]

My heart goes out to you and your son....I have 2 children that were born with hypoplastic right heart syndrome,that's also very scary,I wish I could give you some answers, but all I can offer is an ear, and a prayer....I really hope you find the answers you're looking for....
All my best!

[Pamz]

Well, my son had the procainamide challenge today and, nothing.  We found that this was a test for brugada syndrome and it didn't show up.  The electrophysiologist told us that he has been consulting with another electrophysiologist at Mayo and suggested that we go there to see if they can come up with a diagnosis.  He also suggested that my son monitor his heart rate and if he is showing atrial fib, or if his heart rate jumps dramatically just walking to the door, not to go jogging until it is normal and, if it start raising rapidly, stop jogging immediately.  My son also questioned the metoporol wondering if he needed to take it always and if it was addictive.  He said no to the addiction and said, since my son has no obvious heart problems, that he could actually take the metoporol 3-4 hours before he plans on exercising instead of taking it consistently on a daily basis.  And, he insists that no matter what, he's protected with the defibrillator and pacemaker.  So, one year and 12 days and still no diagnosis of what caused a 23 year old kid to drop from sudden cardiac death.  Still thanking God for the one neighbor that was aware of what was happening around him and saved his life.

[Pamz]

So, this test is for heart disease?  I can't understand that because they said he has no heart disease, no structural abnormality, nothing.  Just appears to now be having atrial fibrillation almost constantly and his defibrillator keeps going off.  He's only 24 and extremely athletic.  I will look at that site - thanks.

[Jerry_NJ]

Sorry you haven't gotten any inputs.  The subject is one that may see more response on the heart disease community. http://www.medhelp.org/forums/show/72

This post will bump your post to the top of the list, maybe someone will come in to this new cycle, keep checking back.