ICD shock Anxiety/ptsd

@greg1951
I am not familiar with Abbott ICD. I have a Boston Scientific.

I had my ICD/Pacemaker implanted in 2006. I never had a shock until 2015. And mine was 5 shocks in 24 hours. From that experience I developed PTSD and anxiety/panic disorder. I have hand many shocks since then.

It took me many months to get over or should I say deal with the PTSD. You were going to asked your doctor about medications. I was put on Escitalopram to deal with depression and anxiety over the PTSD and anxiety/panic disorder that I got from this. It has really helped me.

So I can relate to your feelings and sadly quite common when this happens. What have they said about your AFIB? Have you asked about ablations?

What are they doing about your AFIB. Is it sustained or non sustained?

@jc76 Yeah I can't tell you much about the ICD I have other than I have heard of it and Boston Scientific. It's bluetooth I know that and it has a lot of different programmable features. I have had one ablation which was done about 4 days after the ICD was implanted. The electrophysiologist said 2 or 3 years down the road it may need a tuneup and I believe he was right. Unfortunately I have a cardiologist that would rather give me more pills than allow someone else to get involved. A typical male doctor, arrogant and self important and all knowing. I had to argue with him for 3 years to get him to lower the bottom resting rate from 60 and get it down to 50. My intrinsic resting heart rate is 45, has been for 60 years as I was a weight lifter and runner. He just absolutely insisted it had to be set at 60. I had palpitations, lightheadedness, chest pressure and pain along with syncope and ended up back in the hospital a dozen times. Finally got him to lower it to 50 here about a month ago and nearly all symptoms have vanished. At 60bpm I was being paced 96.6% of the time. I'm waiting to see how that has changed with the lower setting. Supposedly my AFIB is non sustained but I have had several episodes where it was definitely sustained. The day my device fired I had been in AFIB for almost exactly 2 hours when the ICD fired. I spoke to my cardiology P.A. the other day about the ablation and just flat out told her that the next time I have any reoccurrence of sustained activity I would be going for another ablation and that she could either help me convince the doctor of that or I would be changing practitioners. Right now I am on 100mg of metoprolol succinate and 180mg capsule of diltiazem. The doctor wanted to start me on sotalol which I refused since in all his glory he felt he could give it to me in the office and send me home since I have the ICD. The manufacturer recommends starting it at the hospital. I'm one more questionable suggestion away from getting a new cardiologist.

@greg1951 How anxious you are feeling! According to my electrophysiolist, you should not be getting misfires. I have a Medtronic ICD and it was reset once early on. Sodium levels and fluid levels were reported as too high when they were just fine. Please find out why it misfires and how it could be fixed. Ask about a reset. This misfiring occurs with 10-15% of patients and much has been written about it. Please type in your browser ICD misfire and look for articles from reputable sources.

@walkinggirl The explanation I received about my device misfiring is that my AFIB heart rate of 280bpm trickled into the ventricle from the atria and the device detected that as v-tach and then initiated the shocks. It did manage to put me back in sinus but I can think of better ways to get there. At the time it occurred I was only on metoprolol succinate and the cardiologist has since added diltiazem to my regimen to attempt controlling my AFIB and it's occurrence. So far it has been successful. I will definitely be doing some more research on the causes and means of future prevention.

@greg1951 Oh, good! Your cardiologist is trying diltiazem (I know nothing about that drug), and so far it has been successful! We need to remember that medicine is an art because we are all different and it is often an educated guess/choice to find just the right thing for each of us. "I can think of better ways to...." is true, I can think of something I wish my cardiologist had done along my HCM journey before it was decided I needed Buddy, my ICD. When I questioned - the answer was that they had to follow protocol. I'm glad you plan to do more research. Knowledge is Power.

This is really tough. I got my first ICD/pacemaker at 22, back in 2006. It’s a Medtronic. Because I was so young, my heart rate wasn’t programmed to be high enough for me to exercise. Therefore, I fell off a treadmill at the gym and almost fell off my bike on a bike ride. I’m 42 now (on ICD/pacemaker #3), but I clearly remember the anxiety I felt about moving or doing much of anything after those shocks.
It helped my cardiologist program my device better to suit my needs though. Depending on what your cardiac issue is, maybe your cardiologist can bump up your heart rate a bit. Talk to them about it.
And, there’s a high likelihood I would die without the defibrillator because I almost did. I have Long QT Syndrome and somehow managed to survive 3 cardiac arrests. I understand completely how anxiety ridden getting shocked makes you, but keep in mind you wouldn’t have the ICD without a good medical reason. Not sure if that will help or not but I hope you can find some peace. It’s a tough thing to get comfortable with.

@meredithes
Your heart can beat higher than what your pace is set in your pacemaker. It just will pace a certain bottom number and not let it go lower than that.

On the exercise most, like mine, have a exercise mode that your Pace Clinic/cardiologist can turn on. That mode senses motion and will raise your pulsing rate. Not all devices have that but mine does Boston Scientific.

I have a ICD/Pacemaker since 2006. I have had approximately 12-15 shocks over that 20 year period. The first time I was shocked was in 2015. But it was 5 times in a 24 hour period. I developed PTSD from that and extreme anxiety/panic attack disorder.

I now take medication for the PTSD and undergo ongoing medication and counseling at Mayo. My PTSD is always there but after about 6 months from that 2015 episode I was able to return to normal life but always be aware of triggers that brings anxiety/panic and try not let them occur.

On all post I do about this I always add this. My Electrophysiologist tole to think of my ICD/Pacemaker as having your own EMS team ready to help you if needed. Thus I see the device as a life saver, need to have, and lucky I have it.

@meredithes Hello! I am unsure of which post you are responding to. Please clarify that for us.

Your experience shows us all that we are taking advantage of all medical science can offer us. Good rapport with your medical people about adjusting your ICD to meet your needs is a highlight of your post. Some have trouble expressing their needs, it helps to have the questions formulated and written down legibly before setting out to an appointment.

I have not had a shock (hope I never do) thus far, but I understand that once it happens, a person does live with the anxiety of it happening again. It's your personal EMT so to speak, in that it shocks you in an emergency. You have made good peace with yours ((HUGS)).

@walkinggirl I’m not very familiar with how the connect app works. I was responding to @bahayes57 and attempting to help. I’m comfortable with my own device, for the most part. Cardiac issues are so tough. My apologies for the confusion!

@meredithes Join the club of people knowing that it takes time to become more familiar with the best ways to use Connect, especially in responding to posts of the past. I see, now, you were responding to a person's issues with PTSD and anxiety. Your response assures the person you were helping that they are not alone and can come to people like you for reassurance along with reading about experiences in learning to live with a device. You nailed it "Cardiac issues are so tough." I am impressed with how you are coping, knowing that your device is lifesaving makes it all so worth it, doesn't it? Thank you for your input!