← Return to Pacemaker & ICDs: Introduce Yourself & Meet Others
DiscussionPacemaker & ICDs: Introduce Yourself & Meet Others
Pacemaker & ICDs | Last Active: Sep 12 6:38am | Replies (116)Comment receiving replies
Replies to "Hi my name is Kaden, I have been diagnosed with ARVC for 5 years. My defibrillator..."
@kadenhaviken24
What is your age now? That would help us with how many shocks you have had since it was implanted when you were 16.
I had my ICD/Pacemaker implanted in 2006. I am on my 3rd device.
I did not have one single shock for almost 10 years. Then one afternoon in 2015 I got 5 shocks in a 24 hour period. I was hospitalized for several days, released then had a anxiety/panic attack and got put back in hospitalized again.
Now I am going to give my experience here but just realize not a medical professional. I did not realize it but from the trauma of this I developed PTSD with anxiety/panic disorder.
I bring this up because the symptoms you are describing trauma, sleepless nights, worry on every PVC, head starts to race are all symptoms I had. I reached out to my Mayo doctors and they referred me to psychiatric division. There I took a PTSD test and scored only a couple points lower than highest score to determine PTSD.
With that test I was diagnosed with PTSD anxiety/panic disorder. It had got so bad I did not want to leave my home. Mostly because I was worried I would get shocked and how it would look. I was under extreme stress and anxiety.
So here I am 10 years later and exercise 6 days a week 1-2 hours. Enjoy water aerobics 5 days a week and do Sprint Triathlons. It was a very hard journey to get here but I have never got over the worry with every PVCs I get especially those that come on top of each other.
The psychiatric medication specialist did counseling and put me on a anxiety/depression medication. She had to work with my EP and heart failure doctor as the medication caused some increase in electrical waves. I was also on trazadone to sleep and XANAC as needed.
My pace clinic and EP worked on the causes of the shocks. It was determined that a decision to turn off (done because had impedence on wires) my pacing of heart was the cause. It was turned back on. I had other shocks and went through same review. One was the exercise mode was being interpreted wrong. Another was caused when got dehydtrated and electrolytes were off.
So a lot of work on making sure my ICD/Pacemake was not causing issues. I was told I had a very irritated heart. I was encourged to find exercise (could not longer play tennis becuase of jerking of arms/body caused wires to move I like to do. Workding with my cardiologist I found Sprint Triathlons. By doing them you have to really train so I did.
I was still having issues with tachacardia and very excessive PVCs. My EP did a ablation on my RV and it worked. I developed 3 areas on LV that were causing PVCs but EP wanted to try medications before anohter ablation. I began taking a medication that reduces PVCs and tachacardia. With that medication my PVCs were cut in half and have not had a tayacaria episose sence then.
So the above is my experience with this. Asked your doctors to look at did you develop PTSD over your trauma. If so it can be treated. It will help bring back you confidence. Have you cardiologist and EP look at your setting on your device. Have you EP look at medications for PVCs and tachacardia.
Then have you doctors referr you to a psychatric specialist who deals with PTSD and is experienced with treatments. I am not a medical doctor and cannot diagnose you with PTSD but your very words were my words when I was diagnosed with it from the very cause you mentioned.
Then on your part find an exercise (with doctors approval) or hobby you like doing and do it. It can help reduce your anxiety and stress. Have your doctors talk to you about the role of stress and anxiety has on PVCs and PACs. It is the fight or flight build up of adreanlince from stress and anxiety that can affects PVCs and PACs and anxiety/panic issues.
I know this long but when I read your post it just mirrored my journey with my ICD/Pacemaker and my trauma from it. I did not know it had caused PTSD and axniety/panic disorder so was living with the terror and fear until I got treated.