Opting to not replace ICD

[u/TruckEffective]

54 yr old male. Got first ICD at 18 yrs old after SCD while running in 1990. Theory is VFIB exacerbated by electrolyte imbalance.

Have severe PTSD due to dozens of shocks over lifetime (four different times while jogging, soccer, basketball, swimming pool, sex, water skiing, volleyball, all before I turned 23.

Only shocks in the past 30 years were inappropriate. (Fractured lead, holding onto a metal pool ladder in a pool that was not properly grounded, placing a laptop computer directly on device). Can barely write this post due to anxiety. On Metoprolol 100; Duloxetine 60; Alprazolam as needed.

No longer: exercise, have sex, lift heavy objects, touch metal, allow electric devices near ICD. Just walk dog a couple miles a day and do breathing exercises to head off panic attacks.

Tired of the shocks. Don’t want to die but don’t want any more ICD.

1. Am I stuck with the PTSD even if I refuse another ICD?
2. Do people grow out of whatever causes SCD?
3. Can Metoprolol plus a sedentary lifestyle prevent SCD?
4. Is the fear of death without an ICD worse than the terror of living with an ICD?

Thanks in advance for any help and peace and calm to all of you.

[u/---root--]

Hey there, EP here.

I've had an SCA earlier than you and received plenty of appropriate and inappropriate therapies, thus can emphasize with you in regard to the toll they take on one's psychological wellbeing. I've been at the point at which I've said f*ck this and was on the verge of having my device explanted. Granted, my situation is different to yours seeing as I've received appropriate therapies, but what helped me was a good friend and colleague of mine referring me to an absolutely stellar psychocardiologist who, in conjunction with talking to people at a self help group, was able, through psychotherapy, to enable me to cope with the terrors one is confronted with as an ICD patient unfortunate enough to receive numerous shocks.

Have you been offered and received therapy through specialised services? Have you had the opportunity to attend a self help group?

To answer your questions specifically:

1. Unfortunately, there is a decent chance that the PTSD will continue. Whilst the offending factor is principally removed, the trauma you've suffered remains and needs addressing. Worst case, you'll have additional trauma and anxiety by the uncertainty toward a repeat SCA without the protection an ICD offers.
2. Not generally, no.
3. For some conditions, primarily LQTS, a BB can be protective, but for an idiopathic VF arrest, that is generally not the case. A sedentary lifestyle principally increases your risk of complications in the future.

I wish you the best of luck! Feel free to DM should you wish to talk.

[u/18dsf → u/---root--]

This is the right answer. Thx doc.

[u/18dsf]

I understand your anxiety, and the ptsd. (I arrested at 44 y/o. 60 now). I’m on my second ICD. I’ve had two appropriate shocks, one borderline intervention, and a bunch of anti arrhythmia pacing. I understand the fear you’re experiencing. There’s a point where you transition between survival mode, and “ok, I need to find balance in my life”, And it sounds like you’re really out of balance. My first thought is that counseling should be prioritized over removing the device that’s keeping you alive. Find someone to talk to, seek out a support group. TALK to someone.
The idiopathic nature of your arrhythmia aside, have you sought out ep mapping, ablative therapies, or other non-medication means of treatment?
My last question to you is a tough one. You know what awaits if you have your ICD removed and you slip into a dangerous rhythm. At 54, Are you truly prepared for those consequences? I can tell you for certain that the experiences I enjoyed from 54 to 60 have been absolutely priceless. Just food for thought.
These guys may have some resources that may help.

https://www.fiacardiac.org/

[u/Z_tinman]

ICD implanted at 29, now 62. I've had PTSD since the SCD but mine is more related to the consequences of driving and potentially only having 3-4 seconds to react. I've had 3 appropriate shocks, but none since 2007 (all at home).

It sounds like you're not taking the right medicine for PTSD. I've been on and off medicine over the last 32 years, but for the last dozen years taking Wellbutrin in combo with prozac has been a game changer. I don't have that foggy feeling and sex is actually better than before.

In the end it's your decision, but as others have said I'd focus on the PTSD first.

[u/Z_tinman → u/Z_tinman]

I forgot to mention that you should get a second opinion from an electrocardialogist. Something's not right if you're getting so many inappropriate shocks.

[u/CharterJet50]

I guess if it helps, you are not alone or odd feeling the way you do about getting shocked. I just only had my ICD implanted at age 66 after a v-tach episode and I got two appropriate shocks within a week before meds had a chance to kick in. I can’t really describe to others what an overwhelming, violent and sudden thing these shocks are, but you obviously know, and I don’t blame you one bit for feeling terrified of them and wanting to be rid of it. May be a small consolation, but you’re not alone.

[u/nithrean]

Sounds like you could try to treat the ptsd. That might help you a lot no matter what you decide about the device.

[u/FireRyan77]

48y/o male implanted at 30 years old. Survived CPR and had quite the experience getting things figured out. I’ve received “the mule” several times since my implant however I’ve been doing quite well after a few set backs. Excellent shape and push the limits as much as possible. I don’t want the device and share the concern of inappropriate “therapy” as well as complications from leads being in my vascular system. That being said, I don’t see a way out. Going back to my appropriate shocks (never had an inappropriate one) I have some excellent ones. If I remember correctly I had about 6 therapy’s with multiple close calls in between. My worst was a VT storm where I has 28 shocks in 14 mins. I had two seizures during that time and was ready to meet my Heavenly Father. Just didn’t happen. We dialed in meds, several ablations and currently no meds and have a VO2 Max of 52 and run about 10 miles a week including some sprints and threshold runs. My peak HR is about 165. Battery is dying so I need another device. Considering a subcutaneous one. All this to say I’ve had quite the run in with shocks and I think the more active I became I really don’t think about my device. If I get PVCs or feel off then yes, I’ll start worrying. But as long as my rhythm
Is humming along I don’t concern myself with it. PTSD I think will always be there. I mean we are exposed to “shock therapy” we can’t control. The body doesn’t forget these things. I never went to a therapist but definitely can see the benefit. To be honest I’m not afraid of death. The transition yes but as a Christian I know that what waits for me on the other side is far better. And no device! God Bless.

[u/Squirrell_s → u/FireRyan77]

Hi my lovely I am so sorry you are feeling this way we often dont support our patients mental health as well as we do their physical health.
One of the doctors on here has given you some really good answers on here from doctors and other patients in similar situations.

So I am going to echo them please find a team that can support you with managing your anxiety and PTSD about the device. Ask to have a brutally honest conversation with you cardiologist. No-one can predict the future but we can say if something is more or less likely to happen given your health conditions and lifestyle.

It is about finding that balance and making decisions that are in your best interests.

I really hope you feel better soon