Sudden Cardiac Death Survivor

My 23 year old son suffered sudden cardiac death back in March while jogging.  He was revived and his heart raced and they defibulated him.  The doctors tried to find what caused his heart to do this but couldn't.  Instead they gave him a pacemaker/defibulator.  Twelve years ago, my brother died at 22 years of age at work.  Before he collapsed, he said his heart was racing so fast he couldn't catch his breath.  They couldnt tell what killed him but did say his heart went in to arrymthia.  In the last two weeks, my son has started noticing that his heart is pounding hard and just a few days ago, his defibulator went off. He said that after the pounding, he feels like he had just ran 3 miles.

My questions are, is this going to continue for his entire life or is it possible that, with the machine, they'll be able to determine what is causing this and possibly fix it or at least we'll know what to look for in future generations?  Also, how much faith can we put in his defibulator?  This has been very scary.

[Jerry_NJ]

My sympathy for your family's horrendous problems with heart rhythm.  I believe the implanted defibrillators are very reliable and effective, however, I understand the shock can be very uncomfortable.  

I do not have any personal experience, but do know family members and friends with implanted pacemakers and they have worked very well, and for many years.  I don't recall when implanted pacemakers/defibrillators became available, but they may have not been available 20 years ago when your brother died.  I am saddened to read about people so young suffering so with heart problems.

[madjlp]

I'm sorry to hear about your son's medical problems.  I've been thinking about his information for a while now and I can't get past the lack of a diagnosis.  When a person goes into V-Fib and experiences SCD you generally expect to find a structural explanation upon investigating the heart (I've read a few case histories of patients with SCD in the setting of an apparently structurally normal heart -- these incidences are likely explained by missed abnormalities, pure electrical conduction problems or possibly metabolic issues).  Was he evaluated at a university hospital?  Did you get a second opinion outside of the practice of cardiologists who did the initial eval?  Structural problems that can lead to SCD include:

1) Hypertrophic Cardiomyopathy -- easily ruled out via testing such as an echocardiogram which I'm almost sure he had done
2) Coronary Artery Atherosclerosis -- blockages would have been investigated through an angiogram
3) Dilated Cardiomyopathy - again would have been ruled out through echocardiogram and angiogram
4) Coronary Artery Abnormalities - this one is a little trickier but a carefully done angiogram can reveal most issues as would a cardiac mri that looked at the arteries or a CT angiogram
5) ARVD - probably the least understood/recognized structural heart problem.  It can be difficult to diagnose and requires a careful investigation.  Given that ARVD is almost entirely a right ventricular condition it is possible for Drs., who are used to focusing on the left ventricle, to see normal left ventricular function and assume all is well.  ARVD is genetic in 50% of cases so your brother's death is a potential red flag (though other other conditions on this list are also genetic).  ARVD is also especially prevalent in mediterranean populations - particularly in the Veneto area of Italy and the Naxos area of Greece (just in case your heritage runs back to these areas).

The only other cause of arrhythmia leading to SCD that comes to mind is coronary artery spasm but that is generally seen in the setting of coronary arterial atherosclerosis which your son most likely doesn't have assuming his medical work up was done properly.

The ICD is really there to prevent SCD as opposed to providing diagnostic information (though the Drs. may get some info based on the shocks administered).  No one can say how your son's arrythmia will progress over time but I think you have to assume it's a problem innate to his cardiac system and act with the epxectation that it will always be an issue for him unless he is diagnosed and treated.

ICD efficacy is well documented across several studies though, for the most part, those studies have been focused on heart failure/cardiomyopathy groups.  If your son's heart pumps well then I would expect the ICD to keep his rhythm steady and, given the low rate of device and lead malfunction/failure, you can feel good about it as an insurance policy as long as the implanting Dr. was experienced.

The real question for you is where to go from here - GET COPIES OF ALL THE TESTS PERFORMED.  Set up  a second opinion at a the biggest hospital in your area - preferably a university hospital (send them copies of the records before you visit).  Read the test results yourself and make sure that nothing jumps out as obviously "odd".  At a minimum make sure he has had (1) an echocardiogram (2) an angiogram (3) blood work to look at calcium, magnesium, sodium (3) an ekg (4) a holter monitor.  He should also have had an EP study - essentially this is a study of the heart where a specialist (electrophysiologist) uses currents to find and treat irritable focal points in the heart's conduction system - this test might allow them to identify the source of your son's arrhythmia which would also go a long way towards ruling out/in the harder-to-diagnose structural problems.

The highest yield for you would probably be to get the second opinion (make sure to rule out ARVD and coronary artery abnormalities) and, if the Drs are still flummoxed, then look into the EP procedure (if it hasn't been done already).  

I wish you the best of luck.

[PikaPika88]

My first pacemaker implanted in 1982.  It was over 20 years ago.  I also fainted a few times in my life with rapid heart beats.  Most easy faint was during the period of infection associated with fever.   Also fainted in the hospital ward.  Med was not working, they left my heart tachy more than 24 hours.  I have wpw though.

As far as I know, other rapid heart beats can cause young people drop dead are: Brugada, LQTS, and wpw.

[Pamz]

Thanks for the responses from everyone.  We just got home from the Dr's (couple hour drive) and found exactly like madjilp said, that the icd won't tell them what was happening.  The dr said that my son pushed the limit by playing laser tag and running hard for a long period of time.  He also said that the hard beats my son's been having are pvc's and if needed, could give him medicine to control that and that may have been part of the original cause of all this but no way to tell now.  Anyway, the icd will protect him, like Jerry_NJ and PikaPika88 both said.  When my son first collapsed and after his heart started beating (it was around 300 bpm) they defibulated him twice to get him down to 190 bpm, the first on the spot where he collapsed and the 2nd at the 1st hospital.  After they flew him to Lincoln, they ran all kinds of tests, including all the ones listed by madjilp.  They stated that they are sure that this is at the cellular level, nothing to do with his arteries or the makeup of his heart because that as all normal.  Said he had a disruption of his electrical circuit but, it never happened again after the intial event.  They did an ep study prior to putting in the icd where they completely controlled his heart and couldn't get it to go into a bad rythm again.  He does have bradycardia - his heart rate back when he was in high school was actually only around 40-45 bpm but, because he's an athlete, it was considered normal and still is.  They told us that there are 13 known genetic defects of the heart and my son is now 14 because they've never seen it before.  I will see if I can get him in to another doctor because I was really disappointed today when the doctor pretty much said nothing more he can do to determine he cause and that the icd will just keep him alive.  That doesn't help answer what my brother died from and it doesn't protect any children my son or daugher may have in the future since this is genetic.

[madjlp]

I'm sorry you haven't been able to get any firm answers.  It might be worthwhile putting in a call to the Cleveland Clinic - they're basically the gold standard for cardiac care and may have a different take on your son's situation.  Did the Drs in Lincoln do a Cardiac MRI before they put in the ICD?  Thinking about Pika's comments - Brugada can be difficult to diagnose (many variations) and is not always readily apparent from the ekg - so that could be an area to look at.  Maybe someone else on the board has had experience with Drs in your part of the country - rhythm specialists anyone?

[Pamz]

I'd never heard of wpw (just looked it up) before now but I do know they said no to Brugada, long qt, short qt and a whole list of other things.  Don't remember anyone saying anything about doing a cardiac MRI either but they did so many tests that I'd actually need to look at his medical records to know for sure.  The doctors were talking with doctors from other hospitals also.  

Do you faint even with the pacemaker?  Do you only have a pacemaker or do you have a defibulator also?  He did just have an infection a few months ago and he's one to never get sick and it really took him down.  But then he wouldn't take anything and had a fever of almost 105 when I finally drug him to the ER.  He really got chewed out for that one so I'm sure he won't do it again.

[PikaPika88]

Hi Pamz,  mine one is only pacemaker, NO defibulator component.  

No, I haven't had any faint for a long time.  Recently have a few blackouts.  They are very very short duration.  I didn't fall over but unbalance.  Have a lot of dizziness but every doctor ignored me.  Few months ago, I have a blackout while I was driving.  My car ran on the traffic island and caused 2 tyres puntured, bumped my head.  The ER doc ruled out it was TIA.  My pacemaker didn't record any event so they believe it wasn't heart related.

You mentioned above that your son also has low heart rate.  Did the doctor say anything like SSS (Sick Sinus Syndrome)?  I also have SSS and A-Fib as well.  My heart rate falls quite low when I sleep.  Once I opened my eye (still lying on the bed) my pacemaker is pacing to top up my heart rate.  It is like an express train in my chest.... I feel sad because I don't like it.  When my heart rates went too fast (like A-Fib or A-tach), it can travel through the accessory pathway to the ventricle and become V-fib or V-tach (faint).

[Pamz]

His will drop to 30 when he's sleeping (did, now it will pace at 35).  They had it set at 40 and it paced constantly so they adjusted it to 35 and it doesn't pace as much.  They ruled SSS out also.  

We've never thought much on the low heart rate because we all have that on my mother's side - mine runs around 48 to 50, 60 if I just finished jogging. They said it's because of the physically fitness part, he's 5'8 and 150 pounds.  I'm 4'10 and 100 pounds.  My mother is 5'6 and 140 pounds and her's ranges 50-55 but she isn't physically fit and just recently started walking a lot after she retired.  My brother was sort of physically fit - he didn't exercise except playing flag football or something when out goofing around.  He looked very fit, was also 5'8 and maybe 160 pounds.  He liked to sleep a lot.  He had been at the bar the night before he died so they did bring up the fact that he was dehydrated.  He was cutting cement when he told someone he was working with that his heart was racing and he couldn't catch his breath so he went to sit down and then collapsed.  Twelve years ago, they didn't have defibulators on job sites.  Mom can't remember what his heart rate ran.  We don't know anything about my mother's aunt who died at 21 and we really don't know much about my great grandmother, who died at 40 - both were of heart attacks, so they called it then.

Basically, all the doctor's have been able to tell us is that my son's heart soared and then quit, same as my brother's did.  Then when it started again, it soared again so much that it was just squishy, not actually getting blood anywhere.  The guys that worked with my brother said that they did get his heart to beat again several times but it'd beat so fast and then just stop again.  The doctors were so certain that my son was going to have brain damage from this because of no oxygenated blood pumping thru his body but he finished last semester in college (with chemistry) with a 4.0 and is getting a 4.0 this semester also, so, that didn't happen.  They mentioned vetricular tachycardia and said something about it wasn't travelling though to the atrium but don't know what caused it.  They tried to recreate the situation with the doctor controllig his heart in the ER but couldn't.

I was really hoping someting was going to show up but nothing.  I'm really concerned for any future generations and also for my daughter since she won't get anything checked because of insurance.

[PikaPika88]

Mine after exercise will stop (Pick up from the stress test).  Pacemaker kicks, a few beats then stops again....  it keeps doing like that,  My cardiologist said, "it is normal."  I suppose many people have the pattern like that but they're not realising.

If the tachy wasn't travelling though to the atrium that means it generates from the ventricle.  I didn't do much research on this field.  I think madjlp could be right then.  Your son might have one of the posibilty that he has listed on the above post.  Sometime, test won't pick up.  

RVOT also can be fatal.  Although most of the cardiologist said it is benigh.... nothing to be worry about..... reassurance given......  the patient went home and died shortly too.  You need to keep an eye on your daughter.  Many things in medical field hasn't gotten an answer.  A pioneer patient will suffer and hopefully give the doctor an answer or a lesson.  Next generation will get a proper treatment and preventitive.  You need to find a doctor who is willing to be a pioneer or interesting in discovery of heart disease.

[Pamz]

That's crazy that nothing showed up on your pacemaker when you blacked out and wrecked your car.  That would really scare me.  I feel bad for you also that there isn't more being done and hope they do find something in this generation.

[Pamz]

Do you think that the Cleveland Cardiology would possibly do a review on a patient's tests results without seeing the patient?  With college, I know my son wouldn't be able to travel that far until next summer, at which time he'll be on a different insurance plan that may not let him see a doctor outside of this state.  So, basically I'd like someone to review his information this year, while he's still on my insurance.  I know that'd be pushing it though.  

[madjlp]

It's totally worth calling to find out.  I've read case studies that began with the CC reviewing records and going from there.  I assume they'll charge a fee for the service but I would definitely consider it - even if they won't render a diagnosis without seeing him (I wouldn't expect them to diagnose sight unseen) they may be able to make suggestions, offer a plan of action etc - could be a catalyst for your Drs in Lincoln - fresh eyes, new ideas and all that.  

http://my.clevelandclinic.org/heart/default.aspx

That web page offers a phone number/email/online chat to speak to a a Heart/Vasular Resource Nurse - sounds like the perfect contact person to get you started and let you know if/how the CC can help.  

Good luck!

[Pamz]

Thank you for the information - really appreciate it.

[jsuter69]

Sorry I can't offer any sound advice but I can offer you and your son(family) my prayers....my heart goes out to you....I have an arrthythmia that nobody(cardiologists) have seen,they see my age(39yrs), family history(which they really isn't any heart problems) and history of being prone to anxiety so they do some tests, ekgs,stress tests,echos....tell me my heart is structurally normal, and they dismiss me....they tell me I'm just overly anxious, and I'm bringing it on myself....I do have 2 children that were born with hypoplastic right heart syndrome....so I totally understand how scared you must be....between my son and my daughter...they've had 5 open heart surgeries....I guess my point is....don't give up....no matter how annoying or bothersome you might get...keep searching until you get an answer....you are your sons advocate...you have a right to be heard! All my prayers,
Julie  

[wcofuv10]

Had to send this info from www.drsinatra.com Recieve monthly reports from him. Good luck.                                                                                                    What exactly is sudden cardiac arrest?
As the Heart Rhythm Society describes it, sudden cardiac arrest (SCA) occurs when “the heart abruptly and without warning stops working, so no blood can be pumped to the rest of the body.”
As you may know, if blood stops flowing to the brain, the brain becomes starved of oxygen, and the person loses consciousness in seconds. Unless an emergency shock is delivered to the heart to restore its regular rhythm, death can occur within minutes.
Sudden cardiac arrest is not a heart attack.
I’ve worked with many patients who think SCA is the same thing as a massive heart attack and the mass media is also often confused, but don’t be fooled.
Heart attacks occur when the heart’s muscle tissue loses its blood supply and that tissue dies. That’s not the definition of sudden cardiac arrest. Yes, a heart attack can sometimes lead to sudden cardiac arrest, but they are definitely not the same thing.
It’s also important to note that while the majority of heart attack victims know that they have some form of heart disease, SCA victims may or may not have ever been diagnosed with any type of heart disorder.
They’re often active, happy people with no visible ailments, so when the tragic episode happens, seemingly out of the blue, they and their families are totally unprepared.
But, the fact of the matter is this: Most SCA victims have heart disease, they just don’t know it. And, in about 50% of all cases, sudden death is the first symptom.
What causes sudden cardiac arrest?
Almost any form of heart disease can contribute toward SCA. One cause is the somewhat common heart rhythm disorder known as arrhythmia. To learn more about arrhythmia, click here now.
How prevalent is sudden cardiac arrest?
Although it’s not often talked about, sudden cardiac arrest is one of the leading causes of death in the United States. Recent statistics suggest that it kills more people than lung cancer, breast cancer, and HIV-AIDS combined. In essence, every few minutes, someone dies from SCA.
5 Practical Things You Can Do to Avoid Sudden Cardiac Arrest
The key is to do all you can to keep your cardiovascular system in tip-top condition. Following these vital tips will help:
Eat fish. Cold-water fish are a rich source of omega-3 fatty acids. Studies have demonstrated that omega-3 fatty acids can protect you from sudden cardiac death due to malignant cardiac arrhythmias. And a study published in the New England Journal of Medicine found that it only takes small amounts of omega-3s—one to two servings of fish per week—to reduce the risk of coronary events.

Evidence suggests that people who eat fish regularly live longer lives. But that is true as long as the fish are “good fish.” Avoid farm-raised fish or fish that may have been exposed to environmental toxins. My recommendation for the best and safest fish to eat is scrod, wild salmon, mackerel, sea trout, and sardines.

Eat foods that are rich in magnesium. Low body stores of magnesium appear to increase the risk of abnormal heart rhythms. This macro-mineral is essential for scores of enzymatic reactions and normal muscle function, yet is often depleted in patients with cardiac arrhythmias. Despite the fact that this mighty mineral acts physiologically like a calcium channel blocker by stabilizing cardiac conduction, heart muscle, and vascular membranes, it is often overlooked by physicians.

For this reason, I recommend that anyone concerned about their heart health eat abundant amounts of deep-green, leafy vegetables such as spinach, kale, dandelion, etc. These foods contain chlorophyll (which gives them their color), whose chemical composition centers on magnesium.

You may also want to eat a handful of almonds, avocado, pumpkin seeds, sunflower seeds, Brazil nuts, buckwheat, amaranth, or barley each day. Nuts, legumes and whole grains will help you replenish your stores of this key mineral.

Eat potassium-rich fruits. You want to be sure to maintain healthy potassium levels, especially if you regularly consume a lot of caffeine and alcohol. Fruits such as figs, bananas, and raisins are high in potassium. Other good sources include orange juice, potatoes, garlic, yogurt, and whole grains.

I don’t ordinarily recommend taking potassium in supplement form (unless monitored by your physician) because of the risk of elevated potassium levels, which could cause the heart to stop if your kidneys are compromised.

Relax, Relax, Relax. It is extremely important that you take time each day to engage in tension-relieving practices such as yoga, prayer, or meditation to control your stress level.

You can also try listening to music, biofeedback, massage and other techniques such as aromatherapy (using citrus oils in the bath to alleviate minor palpitations).

And, of course, daily exercise is always of great benefit in relieving stress, but, if you are severely symptomatic, I recommend you take a stress test in your doctor’s office before you start any exercise program.

Lastly, I suggest reading Dr. Herbert Benson’s book The Relaxation Response, which drives home the importance of the correct breathing techniques to relax. Proper deep abdominal breathing is a great stress-buster and you can practice it the very instant you feel any tension escalating.

Take the right supplements. The following mix of supplements has been amazingly therapeutic in calming down erratic and excitable heartbeats and, thus, helping to prevent sudden cardiac arrest:

• The best one-two combination to suppress skipped heartbeats is magnesium (400–800 mg) and CoQ10 (100–200 mg). They are magic!

• In addition to magnesium and CoQ10, I suggest adding in fish oil (1–3 grams a day), L-carnitine (500–1,000 mg daily), and D-ribose (5–10 grams a day). (Click here for an important note about fish oil.) I use higher amounts in patients who have more frequent and bothersome awareness of skipped beats. I also recommend this nutrient cocktail to help prevent atrial fibrillation.
Another supplement I recommend in the presence of congestive heart failure is hawthorn berry. This herb has acquired a reputation (especially in Europe where it is well researched) as an important tonic for the cardiovascular system, and with good reason. Its leaves, flowers, and berries contain a number of biologically active substances, including oligomeric proanthocyanidins, flavonoids, and catechins.
In animal research, this herb has been shown to increase blood flow to the heart, which is accomplished by decreasing the resistance in surrounding blood vessels so the heart pumps with more ease. For the relief of minor palpitations, try taking one 500 mg capsule two to three times a day.
Caution: I don’t recommend taking hawthorn berry if you’re on digitalis drugs such as digoxin (Lanoxin) because of their similar effect on the heart. If you feel you need to take hawthorn and digitalis together, do so only under a doctor’s guidance.
In closing, it might interest you to know that there is an advocacy group comprised of SCA survivors, health care and public safety professionals, industry representatives, and others who are interested and concerned about this important health issue. It’s called the Sudden Cardiac Arrest Association and they have a Web site that provides a wealth of information and support. You can check it out at www.suddencardiacarrest.org.
To your health,

Stephen Sinatra, M.D., F.A.C.C, F.A.C.N

[Pamz]

My prayers are with you and your family as well.  I couldn't imagine having two children with such problems.  Some relative's of my daughter's husband had a baby boy - he'll be 6 months old here shortly and he'll be having his 6th surgery (heart cath to put in a shunt) tomorrow morning.  This little guy has a really malformed heart along with several other problems.  Just when they think he's getting healed up and move him out of picu, he gets really bad again.  I see what they are going thru so can only imagine what you've been thru.  I hope they are getting better.  I will continue to try to find out more on my son and brother.  My son has no heart disease - his heart is structurally normal.  My brother's was also, or as they put it in his autopsy, grossly normal.  My son is now having PVC's and I know it's not anxiety related.  He's not worrying about it since the docs siad his icd will cover him but I am because I'm concerned for the rest of the family, not just him.  I hope you find your answers soon.  Not to scare you but I know a woman that thought she was having anxiety attacks but then one day, she felt like she was having a heart attack and went to the ER.  Turns out she did have a problem, they shipped her to the city and she had an ablation.  She's feeling pretty good now and starting to get out and about again.  So, I pray that your situation isn't as drastic and is resolved soon.      

[zemer]

This might be useful. It has some similarities to your family's story.

http://torsades.net/

[Pamz]

Wow, there is a lot of info there and on the links also.  I've never heard of this syndrome.  There are a lot of similarities to my son and brother here but also a lot of differences.  My brother had taken an antihistimine the morning he passed away but my son only took a vitamin pill that they didn't list there.  It also talks about some of Long QT showing up and my son didn't show any of that and this shows up mostly in women - this has effected both men and women in my family.  I do know from experience though that I cannot take antihistimines or aspirin, which are on their list of drugs not to take, because my heart will race.  I've always thought it was an allergy.  It also mentions abnormal potassium, calcium or magnesium, which my son has always had a lower potassium level, showed up in his knees playing soccer.  But I believe it is usually high that shows heart related issues.  

We have just convinced our son of getting a 2nd opinion on all of this so we are going to call the 800 number for the cardiology in Cleveland listed above.

Thanks for this information - it is very interesting