Brugada Syndrome ICD

After my grandma hounded me in finding a support group... Being an incompetent 15 year old I thought the idea of it was stupid and expressing my emotions about what I have been going through was stupid, but I am now a week post op for my second ICD surgery in the past month and right about now, finding this website was so comforting seeing all these people that understand. How is someone really going to understand unless they have been through this? But for all of you on here with an ICD, if you're scared of being shocked... you're definitely not the only one. After being shocked 6 times, I will gladly tell anyone about it so they don't have to feel like I do.

6 Comments

a 60 year gap

by oldearthworm - 2015-09-18 09:09:13

You, sir/madam, are brave .. expressing emotions ..takes "guts" of which I have plenty ..
Just a simple PM for me ..enough for a 75 year old ..
I guess after you get used to it ..I am lucky , I have ..nothing to "get used to" .. I feel the same as before becoming sick .
So, anyway, its good to relate ..

Amymae

by Grateful Heart - 2015-09-18 10:09:20


You have a smart grandma. She's a keeper. :-)

Glad you found us.

I have an ICD for almost 7 years now and I have not been shocked. I would like to hear your story if you don't mind telling it.

Grateful Heart

Know what you mean

by Theknotguy - 2015-09-18 10:09:51

Know what you mean. Maybe you can hook up with some of the younger people on the forum, compare notes, treatments, procedures, etc.

Maybe they can't help you, but it's nice sometimes to talk to someone who's going though the same thing. I'd like to help, but since my hair is grey and is falling out, I don't have the same perspective as you. Also don't have the ICD.

Another thing for you might be to meet with a psychologist who specializes in heart and trauma problems. While they might not fully understand how you feel, they might be able to give you some coping mechanisms. It's worth a shot. And, at your age, your medical insurance might pay for it.

Hope you can get some mental and verbal support.

hi

by andyfowler - 2015-09-19 08:09:23

Hi I have had my ICD for about a year now and I worry everyday about getting a shock. How is it? Do you get any warning before it happens?

Thanks Andy.

Electric Shock Experiments

by donr - 2015-09-19 11:09:14

Amy: You are one lucky Teen to have that grandmother. She must be one Iron Lady to have nagged you into writing to us.

Let's talk a bit about electric shock experiments: Go Google on the following statement: "Psychological experiments using electric shock" & see what you get. It's NOT pleasant at all.

Electric shock is one of the most unpleasant experiences a human can bear. During their civil war in Algeria during the 1950's the French were noted for using crank operated ringers in field telephones to torture the rebelling terrorists to get information. They merely connected the telephone wires to the subject's genitals & turned the crank.

I Googled that phrase last night & found an experiment on dogs that left them permanently affected, but physically unmarked. They became psychologically incapable of acting when shocked after conditioned by shocks they could not escape from.

Generally speaking it is considered now to be unethical to perform shock type experiments on humans.

We have a member who has had an ICD for several years. Shortly after getting his ICD he suffered a "Storm" of shocks - something like 20+ of them in a very short period. A trip to the ER finally got the device inactivated so that his Cardio could adjust the device to act appropriately.

It was - in some respects - too late! He became like the dog I mentioned above - reduced to essentially sitting in his basement watching "Gilligan's Island " re-runs, fearful of the next shock, not knowing if or when it would occur.

IIRC, his were all full power shocks, capable of dropping him to the floor like a mule kick to the chest.

He wound up with a full-blown case of Post traumatic Stress Disorder (PTSD). That is NOT a malady that only affects combat soldiers. It can affect ANYONE who suffers a traumatic event - auto accident, plane crash, trapped in a house fire, sexual assault, being mugged in the park, terror attack survivors. Cops, firefighters, EMT's, medical examiners, all first responders can suffer it. I left ICD hosts to last, but getting a full force jolt can be very traumatic and MAY induce it in the host.

Read my Bio - I do not host any device that can shock me like your ICD. Mine is a simple PM for SSS. BUT - I've carried the 750 lb gorilla called PTSD around for over 30 yrs - I developed it about 5 yrs before it was even given a name back in about 1980 - or before any treatment was developed to combat it. I know the feelings you can be experiencing.

The Knot Guy mentioned getting help from a shrink. Not just any old Freudian based shrink, but one especially involved & trained to handle PTSD. they are out there & some pretty nifty treatments have been developed to very quickly help people suffering the malady. One is called EMDR - Eye Movement Desensitization & Retraining. Google it to learn about it. For someone who is caught early & knows exactly what is the cause of their problems it works fast.

There is also a class of shrinks who specialize in heart procedure patients. I know of two med schools who either have them now or had them in the CARDIOLOGY dept. Univ of Fla at Gainesville & a Med School in one of the Carolinas. There may now be others now.

You are NOT crazy - you are affected by traumatic incidents that can occur at random times & you cannot escape from them. There are many members who suffer this problem.

Welcome aboard. There is light at the end of the tunnel & it's not a speeding locomotive.

Donr


A shock is not that bad at all

by oldearthworm - 2015-10-15 10:10:01

I've been "tingled" by escaping amps and volts (120) more than once . The "good" one is 10,000 volts from a ignition coil .. or an electric fence .. The "shock" from an ICD may be nothing more than a tingle ....It can and will save your life .. No ICD for me either , just a simple PM to correct bradycardia ..

You know you're wired when...

Jerry & The Pacemakers is your favorite band.

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