sore and drained

My ICD fired 4/3, and today I’m sore.  I never had it fire over the past 20 years.... Also a lot of anxiety, and no energy.

It fired 58 times!!  I’m not sure how long I will be sore and how to get energy.  I feel so drained.

Any suggestions?

8 Comments

Your ICD fired..........

by Pookie - 2011-04-12 10:04:07

Wow, that is a lot of times to fire........I don't have an ICD but I've read where you are to go straight to the hospital after this happens....did you?

I'm sure some fellow ICDers will comment on your post. I will even go as far as to guess that when your ICD goes off (that many times) you are going to be very very sore for a while.

And if you didn't go to the hospital - I think you should:)

Take care,
Pookie

admitted

by mimi17701 - 2011-04-12 10:04:22

Pookie, I was taken by ambulance to the ER... and had a 3 day hospital visit. I couldnt have stopped it from firing myself. Needed medicine the paramedics gave me to slow my heart. I was sore right afterwards but now its really hitting me. and the anxiety and lack of energy sucks. Not sure how to get out of this rut.......

hmmmmmm

by Pookie - 2011-04-12 11:04:09

wow, you went through a really rough time, sorry to hear about that. I'm sure in the next few days a lot of our ICD members will respond to your post. It's been kind of quiet here the last few days, but just give it a bit of time.

perhaps you might want to talk to your family doctor about the anxiety issues....I know when I go thru anxiety it affects my entire body = no umph to do anything, like all my energy has been sucked right out of my body. I have to find something I truly enjoy to do, then everything turns around for the better.

And sometimes I have to "give in" and take a pill for my anxiety. We all hate taking pills....right?

I had a specialist's appointment a few weeks ago (nothing to do with my heart, another issue) and he was reading my entire medical file and when he came to all the heart issues I've had, he said to me: "Karen, when anyone goes through anything that relates to the heart, it sure does take some time to regain your self-confidence". He was the 1st doctor who ever recognized what we, as heart patients, go through. I thought that was really nice of him to acknowledge that.

Give yourself some time and if you aren't making any progress - call your family doctor?

Take care,
Pookie

The good news

by ElectricFrank - 2011-04-13 01:04:55

Sounds like your ICD did what it was intended to do. Without it you likely wouldn't be feeling felt pain or anxiety, or anything else.

Keep in mind that anxiety is a natural survival response that under normal circumstances can really help keep us out of danger. With our modern hi tech devices doing the job instead we are left with a bunch of anxiety with nothing to do so it bugs us.

best wishes,

frank

Rut removal

by mrag - 2011-04-16 09:04:56

58 shocks in what, 2 days? I didn't think the ICD battery had that much charge. Your doctor, EP AND your cardiologist should all be talking with you. Your device should probably be reprogrammed and a new set of meds prescribed and a nice clear consistent explanation of what happened and why should be given to you by all three.

Now the 'bad' news. I don't know of a short or easy or even long way to just get over an experience like that. It is like an unwanted tattoo-you have to learn to live with it. Drugs like xanax can help and know that a "rut" or anxiety or fright are the normal standard responses to a "storm." If I got 58 shocks, I'd be in a rubber room until I got some really good comfort talk from a really good EP. Emphasis on a "really good EP." And even then I'd always be looking over my shoulder. Welcome to the club.

being strong

by mimi17701 - 2011-04-16 11:04:43

Mrag, that was 58 shocks in less than 30 minutes... i thought I should have got some kind of medal or something....lol. I have been reassured by my EP and my primary care doctor over and over. I felt the need for the rubber room... Believe me, life isnt easy. They put me on ativan and celexa and also some meds to slow my heart rate. My main concern right now is the fatigue.... I'm so tired all the time. I'm taking one day at a time...... each day is getting better.... Thanks

sore and drained

by roy haycock - 2011-04-30 11:04:14

Mimi,
I have just signed -in having been away and as you posted such a long time ago everything may now be OK, but,if not,can you tell me what lead you have because, if it is a Spint Fidelis, the number of shocks you have had could indicate a faulty lead whic needs replacement, which is what I have had
. Pleaase post again if you are still concerned.
Best wishes,
Roy

You are a warrior

by Katelyn - 2011-05-15 01:05:04

I am 24 years old. Last year my ICD lead fractured, causing and alarm to beep in my chest. Before I could get to a doctor or really understand what this alarm entailed- I was shocked 7 times in 15 mins. I was alone on the sidewalk outside my apartment, getting ready to get into my car. I called 911, each time I got shocked the phone flew out of my hand and I had to crawl to reach it. The EMTs arrived and were able to retrieve a magnet I kept in my apartment, given to me from my doctor. When we placed the magnet over my device, it suspended the shock therapies until getting to the ER to turn it off. (The EMTs were not trained in how to deactivate the shocks, nor did they carry a magnet in the ambulance). Now in my case, the shocks were inappropriate. In your case, it sounds like they were appropriate and you would not have wanted to suspend the therapies. Although, I recommend every ICD patient to get a magnet from their doctors (who are given them from the device manufacturers), in case their device ever malfunctions. I also and beginning to look into ways to lobby so that ambulances must carry them and be trained on how and when to use them for ICD patients. I had my faulty lead removed and a new one put in that same week. I have had 2 appropriate shocks since then.

For a week or two after the lead broke, I had extreme anxiety, nightmares, and phantom shocks in my sleep. My doctors never recommended any psychological help, which I think is a HUGE miss for survivors of shock storms. Doctors do not yet understand the mental damage that is caused by this trauma. My nightmares went away, but I still had unexplained trembling and flashbacks. Months later I went to a psychologist who diagnosed and treated me for mild post traumatic stress syndrome. After a couple months of treatment, I finally began to feel like myself again. I only wish I had not waited so long to admit that I needed help.

You are a warrior, you have experienced an incredibly traumatic event that doctors have yet to understand the effect on the body of the patient. You need to be your own advocate and seek the help that you may need to get better and move on with your life. You have already begun that by posting on this site. I would encourage you to learn all about your shock settings, and the thresholds that led to your shocks. I have downloaded my ICD clinician manual off of Medtronics website, to learn more about the settings that I can ask my doctor about. There are people like you out there. I read of another woman on this site who was shocked 30 times in a row when her lead broke. Please feel free to message me if you want to chat any more. Take care, Katelyn

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But I think it will make me feel a lot better. My stamina to walk is already better, even right after surgery. They had me walk all around the floor before they would release me. I did so without being exhausted and winded the way I had been.