ICD discharge

Here I am back again.  It's been a while but my ICD discharged on me again on 7/19/21.  I'm feeling that PTSD again, every time my heart flutters, is it going to go off again.  I thought after the shock storm in Sept 2018 I thought a single discharge wouldn't affect me this much, but it has.  And the doctors are no help.  The electrophysiologist increased my Amiodarone with the comment "We can't have this keep going off like this".  Obviously he didn't look at my history, just at the number of times the device has discharged, a total 8.  If you take off the first shock that they forced to "test" the device after implant and then treat the 5 shock storm as one, it has only gone off 3 times in 4 years with the last one being almost 3 years ago. I tried to explain that to him but he wasn't in the mood to listen to a lowly patient.  Anyway, just trying to get my legs back under me after being kicked in the chest by a mule and then wrestling a bear and I guess I needed to vent.  On the bright side, the echo and cath they did turned up nothing new that we didn't already know about so I guess there's that.  Again, thanks for reading, hope your having a better day!


9 Comments

ICD shocks

by Gemita - 2021-07-26 07:33:14

Bob, I am so sorry to see you back again under these circumstances.  I cannot even say I understand, because I clearly do not understand what it is like to experience a shock or to wait for one to occur.  It is certainly your choice whether you want to take an increased dose of Amiodarone.  I do not believe your doctors should bully you into taking a higher dose without your full consent.  I know Amiodarone is one of the most effective meds out there to stop arrhythmias, but I also know it needs to be carefully monitored to prevent unwanted, potentially dangerous lasting side effects.  I hope your doctors are monitoring you very carefully?

Vent away as much as you want.  There are members here with ICDs who will understand what you are experiencing and who may wish to tell us how they manage their painful jolts and fear for the next one.  Your echo and catheterisation results showing nothing new I suppose is a sign of successful management of your current condition and arrhythmias, so that is good news.

Yes I am having a better time this end, thank you.  My arrhythmias are well tamed at the moment, but like you, I know this situation can change rapidly.  That is the nature of electrical disturbances.  Understanding them, knowing what symptoms to expect when they occur, helps me to manage them successfully on minimum beta blockade.  I think you are on small dose Bisoprolol too Bob.  It works very effectively for me.  Have you asked your doctors whether a small increase in Bisoprolol (rather than Amiodarone) might work just as well?  Would certainly be safer, perhaps.

Keep strong and keep your spirits up

 

ICD

by Tulp - 2021-07-27 07:26:40

Such à horrible thought. Did they actually test you ? Looks like torture.

One on the things I really feared since my device was placed in february this year. My doctor said it would feel like a boxer punch in the chest. Don't want to meet the bear nor the mule !

I sincerely hope you will find peace with the matter. Nobody should worry like that. As usual, gemita has said it all, but I wanted to add my support to your post.

Tulp

ICD discharge

by Julros - 2021-07-27 13:01:23

Ugh, I am sorry that you have had to experience this and that you don't feel supported by your team. Is there a support group in your area? I know when I was doing clinical for my masters program I attended such a group, facilitated by a device nurse, and it seemed like such a positive atmoshere. 

I don't have an ICD, but I had sort of a shock one night while working on the cardiac floor. A patient was having runs of ventricular tachycardia and I was trying to convince him to sit or lay down before his ICD fired. Unfortunately he was deaf and took my gestures to sit as a threat. He grabbed my wrist just as the ICD fired. It reminded me of touching an electric fence. Unpleasant to say the least and I gained a lot of understanding that night. 

Thanks Gemita...

by BOBTHOM - 2021-07-27 20:23:45


Gemita, thanks for the supportive comment.  The Amiodarone has proven negative side affects, the worst being lung scarring, and of course skin turning blue if you get to much sun. And though it's effective it's also proven that the side affects will happen and it's a matter of dosage and time until it does.  That being said, after the first shock in Jan 2018 they put me on 800mg, after 10 days down to 400, and then I pushed to get to 200 then 100, then 100 every other day.  It worked for nearly 3 years, now back on 200mg daily (for now).

I've tried the increased bisoprolol but it causes my heart rate to drop well below 60 overnight.  I'm taking 1/2 of a 5mg tab daily after lunch.  If I take it later my heart rate drops to low to early in the evening and I end up napping and then not sleeping overnght.

My other conditions I have found are up to me to manage.  I've virtually eliminated red meat from my diet.  Mostly chicken, fish, turkey, with a little ham/pork and eggs.  I've also learned a lot about the structure and function of the heart and my specific issues and continue to challenge the doctors who seem quite content to manage the symptoms because identifying the underlying conditions is difficult if not impossible. In my quest I found a fully ocluded iliac aretery and fought through 3 medical groups before finally finding one that would take care of it and that brought some much needed relief.

I encourage everyone to learn, learn, and then learn some more.  Get copies of your reports, and the images. There are free dicom viewers available online (Sante is what I use) that will help you see the images, of course you have to know what your looking at so more learning, but I've found it useful.

Anyway, feeling a little better today but had a few flutters that were worrisome.  Day by day wish push on!

Again, thanks for the encouragement and hope your issues stay under control.

Tulip....

by BOBTHOM - 2021-07-27 20:35:33


On the testing, if your referring to the test shock they gave me during implant, yes, after telling me he would NOT be doing that he did anyway.  His reason was something about the lead positioning, instead of going straight down toward the apex he hooked around and embedded it in the side wall.  He of course retired last Dec and they are finally getting around to assigning me to a new electrophysiolgist who I will meet next week.

Don't mean to scare you, and everybody feels it differently.  I can feel it when my device spins up getting ready to pace me out or shock me as it thinks it needs to so at least I have a 2 second warning, gave me a chance to pull over as I was driving. Remember resting heart rate is 60-80 beats per minute so that's 1 or more beats per second, so it happens quickly.

And the force, I'm slender, standing about 5'10" and only weigh about 140lbs so when it jolts me I really feel it, and the after affects I think are from the electrical tensing up for lack of a better term.  The mental aspect, just like any other fear of an bad experience, and I know I just have to get past it, and I know I will with time.

Good luck with yours and I hope it doesn't discharge!  The longer you go without it discharging the longer you will go without it discharging. Sorry if that sounds silly or confusing but it's been shown that the earlier/faster the time to first discharge the more often it tends to discharge.  I went 1 year and 1 week to first time, then 8 months to the next.  Since then, had my iliac artery opened and went almost 3 years! 

Thanks for the comment and encouragement!

JulRos...

by BOBTHOM - 2021-07-27 20:44:10


In this day of COVID many of the support groups have disbanded or move online and it's not the same.  I tried to attend some in my area at first but they all seemed focused on pacemakers and me with an ICD didn't seem to be taken seriously.  Of course I understand, they have more serious daily issues with their hearts than I do, that's for sure and I count myself lucky for that, but many were really dismissive and I could not relate to many of the conversations for example heart rate not increading quickly enough during exercise etc. You see similar discussions on this forum but at least you can just skip past.

As for the second hand shock you received, beleive me when I tell you it's completely different on the other side as the lead is directly into the heart and is meant to stop the heart and hope that it restarts in a normal rythm.  I could the EMS team with 2 shocks durinig my shock storm, even though I warned them they continued to put in the IV line etc which ended up getting ripped out, fortunatly they hadn't punctured the vein yet! 
Hope you have a wonderful day and your issues are under control!

icd shocks

by islandgirl - 2021-07-28 00:42:13

I can sympathize....it does feel like getting kicked by a horse in the chest.  I went 3 years without any shocks, and experienced a shock, lost consciousness with a total of 4 shocks and became conscious--and very traumatizing to my friends that experienced that event.  I spent a few days in the hospital with adjustments, tests, as I had arrested and was asystole.  That was the start of 13 months of multiple shock episodes, totalling 20.  The events included 4 shocks in the hospital, losing conscioiusness before each shock; a shock in crital care unit due to a different hospital than my EP is affiliated with and they were fooling around with my heart medication doses and wouldn't listen to me; numerous 1-2 shock events at home.  3 ablations last year seems to have helped, and VT free starting in January.  Since mid May I've had 4 VT episodes that the ICD was able to pace me out of the arrhythmias, the most recent one last week.

I do have PTSD and when I feel my heart in tachycardia I have flashbacks of getting shocked.  It's not only the pain and getting caught off guard with the shock, but afterwards realizing that the ICD is saving my life---which my EP reminds me is the reason I have the ICD.  Good luck.  I try to stay positive and thankful for each day, 

I hope your EP works with you to try and adjust your ICD and meds.  My EP doesn't prescribe amiodarone.  I had been precribed it when I was in the hospital with a different care team and when I was discharged he changed my meds.  The reason for my arrhythmias is unknown.

ICD shocks

by Old male - 2021-08-02 00:19:23

As Islandgirl said.....it's a life saver.  My 2 shocks were more of a surprise than painful and over before I realized what happened.  Without the ICD, many of us would not be here commenting.  Life goes on but I can sympathize with those having bad experiences.

finally starting to get past it...

by BOBTHOM - 2021-08-02 17:29:39


It's taken time but finally starting to get past it.  Whenever I drive anywhere, leaving my development, I get to the corner and wonder if it's going to go off again.  But the more often I do it the more comfortable I get doing it. 

My bigger concern is I have no confidence in my health care "team" if you can call them that.  Most are people I've never met or heard of trying to direct my care based purely on the gudelines and standard of care without taking into account my specific situation.  All of the, or none of them might be the better way of saying it, has investigated the PVC's including many bigeminy's and trigeminy's and how the ICD would interpret those.  I keep very close track of my heart rate, I've actually been called anal about it for keeping a spreadsheet, and apart from my heart rate going to 100 after showering, all was normal and my heart reate was 71 when I got into my car that morning.  They also look at the number of shocks and base their recommendations on that instead of the number of incidents.  It's very frustrating.  And then I find that my 2013 and 2016 ecocardiograms show my aortic valve normal and trileaf, then 2019 report says aortic valve is bicuspid and calcified and that there is no prior eco to compare it to.  All this brought to you by the friendly folks whose MRI report lists my pelvic region as "Prostate appears normal as does the uterus and ovaries".

Sorry, rambling on.  I get to see the electorphysiologist tomorrow, my bet, increase the amiodarone and recommend ablation and if I fail to accept there will be the threat (once again) of pulling my drivers license..  Any takers?

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