Device issues/ mental health

I'm really struggling with phantom shocks syndrome. Is anybody else suffering from this? How come there's not more education regarding this subject?


5 Comments

Phantom Shock Syndrome

by Gemita - 2021-10-17 19:39:27

Hello Batteries_Icluded,

I cannot imagine what it is like to actually experience a shock or to have to anticipate one, but to have to suffer from "phantom shocks" in addition to appropriate and inappropriate ones, is cruel.   You are incredibly brave and I wish I could help to relieve your symptoms.  Phantom Shock Syndrome sounds truly awful.  I didn't realise how prevalent it was (as link below) confirms:

https://academic.oup.com/europace/article/15/10/1463/530991

All any of us can do is to help spread awareness of this debilitating condition and to get help whenever this happens if only for reassurance and to check that all is well.  The more we can learn to confront our fears, the more likely we will eventually help to control our symptoms.  

Are you able to share with us how you are coping with this syndrome?  I found Cognitive Behavioural Therapy to be immensely helpful when I faced malignant disease some years ago.  Just talking about my fears at that time, getting it all out in the open, was such a relief.  I found the fear of my disease was far far worse than the actual reality and as you can see, I am still here to tell the story.  

I wish you lots of strength and hope you get the help you need so that you can look forward to a better quality of life.  Take good care

Phantom shock

by ROBO Pop - 2021-10-18 12:30:17

When I first got my ICD the mfr techs used to give you a Jesus jolt during interrogations to test function. At least I knew exactly how it felt so when the real thing struck there was no doubt. I can't but wonder if that wouldn't reduce anxiety of phantom shocks. 

If you've never had an actual Jesus jolt the best I can describe it is like a jolt you get from being shocked by electric wire. It's virtually instantaneous like a hard thump, your heart clinches like a charlie horse, and then it's over. The next day I have a slight ache in my heart but no big deal. And no it doesn't feel like a mule kicking you. I know of which I speak.

I hope you find some relief from this anxiety it can't be fun. Often treatment is far less than our imagination.

 

Thank you

by Batteries_icluded - 2021-10-19 15:20:02

Thank you both for commenting.

ROBO Pop- The first shock I received i was walking up stairs and it knocked me backwards. I didn't know what to expect and I missed grabbing the the railing. A few days later I was taking a shower and received another one. A couple more days later i was driving to work. I was 22 and had my first device for no longer than a month. I was told it was due to an inappropriate setting. An inappropriate setting? Ive never heard of a Jesus jolt. Have you ever had your device give you appropriate therapy?

Gemita- thank you for your super thoughtful comment and article. My phantom shocks didn't start until 2013. I had a new device(my 4th) inserted into my stomach. I had quite a few surgeries when my ICD was located in my peck muscle due to it not staying 'tacked in'. Come to find out this was a mechanical error with the new device and I had received over 200 shocks in one month. This was registered on the device. The phantom shocks started after that. When I would do to get checked out the doctors would look at me like I was crazy because nothing was registered on the device. I could be my life they were honest to goodness real shocks. After doing my own research, because the doctors made me feel crazy, that phantom shocks were even a real thing. I just wonder how many of us are going through this, alone and scared. I'm having difficulties actually finding someone that will help me through this. At least now, thanks to you i have some hope with looking into cognitive behavioral therapy. Thank you😊 

Ouch

by MinimeJer05 - 2021-10-21 15:32:47

That sounds terrible and I hope you find something that helps eliminate these or lessen the blow of them. When I first got my PM implanted I would get jolted awake right as I was falling asleep. I notice that it does happen to me randomly as I get sleepy and start to doze off -- but luckily for me, I am usually laying down on the couch or in bed.

Doctors tell me its something related to stress or anxiety and not to worry -- so I have been trying to ignore them or accept that these are "normal" for now.

But that doesn't make it any easier. 

I hope that you find the help you need to address these!

Jer

Hypnic Jerks

by Marybird - 2021-10-21 19:31:49

Now that you mention this, Agent, I recall I used to get them when I was younger, but that I've reached my "golden years" I don't notice it anymore. Has nothing to do with pacemakers.

I'd never heard of the concept, or incidents of phantom shocks with implanted ICDs until Batteries mentioned it in her post. I did a Google ( actually DuckDuckGo) search and found several articles that addressed the topic. Apparently it can occur in people who have had real shocks with ICDs, either from malfunctioning devices or or those that needed adjustments. The phantom jolts are perceived like real jolts in those that suffer from them, but there is no recording on the device that such "therapy" was ever delivered to the recipient. The cause is unknown, though believed to be associated with anxiety, panic attacks, other psychological issues. If there's a physical or device-associated factor with this, they aren't saying so.

I'd wonder if it's a little akin to the "phantom limb pain" experienced by some people who have had limb amputations. I imagine it must be miserable to live with.

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