new ICD and questions

[tamera9199]

a month ago for what the docs still cannot seem to find a reason for, I went into full cardiac arrest.  I had probably done that on my BF's deck while having a kids party, but went to the ER for it also, and coded there! I was paddled twice, do not remember a few days, but doing ok now!  
I was given an icd, which is doing fine..  I am on a beta blocker, oh and I was 51 at the time of the incident! I feel  a lot older now.  There is no family history of this, but my heart was racing.  I am still very dizzy and have absolutely no appetite, ( which is fine,  I need to loose a few) but.. wondering ifthatis normal.  I have 2 kids at home still, they are 11 and 12..
Does anyone have experience such as this??? What do  I have to look forward to???
There is no damage to my heart, before or after this incident... I was in the hosptial for 9 days a few in ICU and a the rest in telemetry.  I was in great care
I  was like the youngest on the floor..  I did have lots of neurological testing also, as I lost my memory for a few days, and what brought me in was a loss of consciesioiusness, ( sp) and I woke up shaking all over, most likely God restarting my heart, and it fibrulating!( that is my guess)  thanks for any and all questions.

[Mom2four85]

good thing they did one; many doctors don't think of doing one....let me know if you want Dr. Brugada's email to send to him to rule that out if they haven't.

[tamera9199]

Yes,  I had the tilt test and the cardiac mri, before the ICD. I was in 9 days, some in ICU, but the last 24 hours they did the ICD, they had done all the testing before that! THanks. I do have a ton more questions for the docs when I see them on the 21st. and then millions after that!

[Mom2four85]

I think it all depends on your system and what caused it really; there may be something that they haven't found yet.

I'm curious since you've had so many tests, did they do a tilt table test also? if so, were the results normal and did they send them to an ANS specialists like Dr. Blair Grubb or Vanderbilt Univeristy?

All my damage wasn't apparent at first but started then just went down hill from there the past 2 years, but if you don't have any other symptoms than what you've listed it could be the dizziness & loss of appetite is due to your body's reaction or the meds and you may recover quickly.  Something to definitely discuss with your doctors; maybe a change of meds or different dosage may help you.

[tamera9199]

Thanks all. The dizziness was there a bit before, but has improved slightly since. I have had several of the top docs and they are telling me that about 5% of the population never get to figure out what went on, and why!  I have no damage,I have an electical doc as well as a cardio and an internist and a neuro and all.  They all are on the same page, that this is a fluke...  My heart over fired and caused this.
My kids were adopted so they cannot inherit my gene pool, but thanks for the wise thots on that! I would be doing that otherwise.  I have had ekg's eegs, mri's before, ct scans, angio and otherwise everything you could think of... there is no test I did not have. The records were sent to another place in the country and they were amazed at what tests they did.. I am safe, but still wierded out by all of this.  
How long does it take to recover from an incident such as this?? New to this, wish I didnot have to be involved but am..

[Mom2four85]

Sometimes I wonder where my brain went; glad jrbon posted this - I should have added it and usually give the same advice. [racks my brain, I know it's in there somewhere]

As well as ARVD and HOCM; Brugada should be ruled out.  I have Dr. Ramon Brugada's email if you have copies of your EKG's and a can scan them to send.  You can email him with a brief family and personal history and he is very good about personally answering your email and letting you know if he thinks you have Brugada or not and who to see if there's a possibility. Just send me a message and I'll give you his email I have, if they haven't ruled it out yet.

Since you have an ICD, they can't do a cardiac MRI now - I forgot to ask if they did one before?

Also, did the dizziness only start after taking meds or have you had other episodes or episodes of fainting, lightheadedness, dizziness etc before?

[jrbon]

I am not an expert neither, but I think that even if they do not know what caused your problem, it is very important for you that they confirm that was NOT a Brugrada syndrome because it is genetic and you sons could also suffer it.

Jesus

[Mom2four85]

Before I had an ICD put in at age 42, I was pretty healthy -  walking, running doing anything I wanted basically. I went in for a seemingly easy fix to a mega ton of pvc's with no structural heart damage but had major complications during surgery.  A few days after surgery I had a cardiac cath that showed I had developed cardiomyopathy; where it wasn't there previously.

I had a Tilt table test to see if they could figure out why I fainted since age 9 and my heart stopped during the test then they went in to do the EPS and my heart stopped 3 more times and i suffered alot of damage all over my body and they think it caused mild brain damage.

After surgery; my dizziness and vertigo increased dramatically due to what they think was damage to the autonomic nervous system; which could be part of what happened to you also.  Have they checked the possibility it's your meds?  I tried 5 or 6 meds before going on Inderal; which worked for awhile but then i was getting too many breakthroughs and was switched to the extended release (brand name).  My EP said sometimes it's just the formula in generics (fillers that go in) that some patients can't handle.

If you haven't you should find a good Electrophysiologist to figure out why you had SCA; it could be a number of things.  They still don't know exactly what's wrong with me - they've suspected ARVD, HOCM and a couple of other things and dx me with HOCM just so I could get my ICD but there's no clear cut diagnosis I've been told.

I still have memory loss and nerve damage throughout that's worsened over the past 2 years; but I'm told when your heart stops like that for any length of time it's to be expected; not to mention the emotional/mental part of all that's happened.

Hopefully they keep checking to make sure you haven't developed any damage and will find what the cause is and what's going on with your symptoms.  I find it helpful to keep a notebook with dates, times and symptoms then when I go to the dr I explain and show them what's going on.

[jimmyC22]

I am not a Doctor. If your heart has no damage, it may have been caused by the electro chemical system that triggers your heart to contract(i.e, your biological pacemaker). For various reasons, this system can go out of whack, causing fibrillation. The fib is a rapid and non rhythmic beating of the heart. If it goes on too long, the heart has no time to fill up with blood, and therefore can not pump blood to the body efficiently or at all.
   I am not well versed on what causes this, but i do know it can be from chest trauma, electrocution, certain viruses, and in some cases,  a rogue cardiac cell, that fires to the beat of its own drum(and definitely no pun intended). Hence, the icd. The lady down the block from me is 87 years old, and has been living for I believe 20 years like this. She is very strong and has never had a heart attack. I wish I could help you more. Also, there is a type of cardiologist that specializes in these type of problems. I believe they are Cardiologists with specialty in  Electrophysiology. They very effectively use drugs, chemicals, and mechanical devices to treat symptoms such as yours. Good luck and feel better