Shocked, now have PTSD

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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LisaCaissie
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Shocked, now have PTSD

Post by LisaCaissie » May 15th, 2018, 10:32 am

Has anyone ever been shocked for going into Atrial Fibrillation? My heart rate went as high as 250 bpm. It was the scariest thing I have ever been through as I was awake the whole time. Shocked 23 times in a 1/2 hour period until they got me on an Amioderone drip. Kept in ACU for 5 days. This happened a month ago and I just got my ICD (CRT-D) put in in January. I am living in fear every day, as soon as I feel anything funny going on with my heart or if I see that my heart rate is even close to 120. Doing online PTSD therapy and am looking into seeing a professional. Have to take Clonazepam every day.

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mrag
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Re: Shocked, now have PTSD

Post by mrag » May 15th, 2018, 11:43 am

Maybe some others can break down your post, but a-fib causing a shock storm? I don't think that happens. I also don't think amiodarone works in only a few hours. Also, 23 shocks in 30 minutes sounds a bit inaccurate given charging times and all. But it is possible you were just told a story and or you possibly misinterpreted some parts.

The key part though is you had a "storm" and storms (experiencing more than 2, 3 shocks in a 24 hour period) are currently quite rare nowadays. Was your device set for (ATP) "pacing?" Is it set for pacing now? I didn't have a chance to read your intro bio so don't have a clue on your age, condition, location, doctors, knowledge, etc which makes it impossible to offer the more usual worthless albeit free advice. But don't let that feel you lucked out:

1) I'd be going for a 'second opinion' from a REALLY GOOD, HIGHLY REGARDED EP (usually found at big name hospitals or research universities). That means some EP miles and miles from whoever implanted your device. This is for your device settings AND to help with your PTSD.

2) PTSD is the most normal reaction for what you experienced. It takes a long time to go away. Let me repeat, a long time. Education and learning what happened and why is typically a good start to fix. That and numerous prescriptions of Xanax (Clonazepam).

3) Start talking and looking into "ablations." (again, let me stress consider only HIGHLY REGARDED as in world famous)

4) Your "fear" is quite a normal reaction although keep in mind the reason you got an ICD/CRT. The device apparently did exactly what it was supposed to do, keep you alive. So given the alternatives .. . .in column A, you live with PTSD, in column B, you're dead. Your call ;-)
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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ROBO Pop
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Re: Shocked, now have PTSD

Post by ROBO Pop » May 15th, 2018, 12:23 pm

I think what Mrag was trying to say is perhaps you could introduce yourself to the group so we know more about you and your condition.

PTSD, depression and anxiety are pretty common in our group, but it sounds like you are taking steps to get it treated. Honestly it does sound as if your defibrillator is set up (programmed) wrong and needs to be changed. Good luck to you
Broken Heart
Nobody has ever survived life, but I'm trying...
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mykidsmom
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Re: Shocked, now have PTSD

Post by mykidsmom » May 15th, 2018, 12:42 pm

Morning all...just reading your post here..about 3 years ago I had 22 or 24 appropriate shocks in a 24 hr period but it was christmas eve so i ignored them.....then i had the mother of the jesus jolt as robo calls it..where i fell to the ground and thought id been shot..later the next day i had a couple of scas...Id had what i figured were angina pains..but turns out they were mild to med heart attacks..and i had a 99% blockage in the 4 ventricles so it required a bypass which i had..Ive never had afib cause a shock storm..i was in fact told it couldnt happen...as the boys say it could be the settings of your device.

I had two panic attacks later when i came out of hospital...but i dont think i had PTSD mind you i now have PTSD

good luck
I think.....Therefore I am.!!!!!

LisaCaissie
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Location: Oshawa, Ontario, Canada

Re: Shocked, now have PTSD

Post by LisaCaissie » May 15th, 2018, 3:06 pm

Okay, here is a bit more info for you: I am 44 years old. I have cardiomyopathy. I will try to make my story brief. I was diagnosed with Leukemia in 1991. I had many procedures, including a bone marrow transplant which involved heavy chemo and full body radiation. Transplant failed and they had to treat me with more chemo. This, in turn damaged my heart. Doctors told me I would not live another year without coming out of remission but the good Lord gave me a miracle and I am still alive today.

Many years later now, and 8 months ago, I formed a clot in my right atrium which released into my kidney. I now have 30% function from whatever is left of my kidneys. I was doing very poorly until they decided to put in an internal defibrillator (ICD) in January and they changed my heart medication. I was doing very well and feeling really good up until a month ago. I was walking my dog and went into atrial fibrillation which set off my defibrillator. I was shocked 23 times in a half hour time until they could get me to emerg via ambulance where they put me on a 24-hour drip to slow down my heart. It was racing at 250 bpm. It was the scariest thing I have ever been through in my entire life and I have been through a lot. They kept me on Amioderone, 3 pills per day and now I am on one pill per day.

So, now my prayer is that the atrial fibrillation will stop. Whenever I feel that anything is happening in my chest area, I go into panic mode and think I will get shocked again even though the doctors have changed the settings on the defibrillator and assure me that I won't get shocked again unless absolutely necessary to save my life. I have gone into AFib twice since coming out of the hospital, just last weekend, 2 evenings in a row. I hyperventilate and have to use my breathing exercises to calm down. I also pray A LOT!

LisaCaissie
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Re: Shocked, now have PTSD

Post by LisaCaissie » May 15th, 2018, 3:24 pm

Mrag: It was caused from AFib. They had me all hooked up and told me I was in rapid AFib. What else could it have been? It did happen. Amioderone probably didn't work that fast but my heart rate came down a bit once the drip got started and the shocking stopped. I am still on it in pill form. It was 23 shocks because I was counting them and the next day, they came in to adjust my device and told me that it was 23. I thought it was somewhere between 15-20. They told me that after 6 shocks, it should stop but it kept resetting itself, thinking I was in VFib and continued to shock. I have everything in writing. Yes, my device was set for pacing and it still is. They have adjusted my device so that my heart rate can go up to 190 now before the machine will start 'thinking' about shocking. I have a very good EP, one of the best in Ontario and have heard excellent reviews on him but maybe I should go and talk to someone else. My team of cardiologists in Toronto are also setting me up for a consult on doing ablation. I will try anything right now to help with what I'm going through. Thank you for mentioning my bio, etc. I am very new to this forum and am not too sure how it all works yet. Thank you also for your advice.

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mykidsmom
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Re: Shocked, now have PTSD

Post by mykidsmom » May 15th, 2018, 3:29 pm

Lisa i see you live in oshawa..i Lived in whitby and oshawa until last year when we moved to PTBO...so im well versed with the cardiologists & ep's working from the oshawa hospital and the Centenary where the ICD clinic is..Theres a cardiologist in oshawa..dr Bergava who runs heart information clinics or used to...give his office a call hes on king street facing the wendys i think...and if hes still doing the clinics go to one.theyre free..he'll answer any questions you have and its always good to be armed with info..and you will surely benefit from them i know i did as did many of my friends...and you do not have to be a patient of his..i wasnt..

One of the Better EPs (connected with the ICD clinic in Centenary) is Dr Makanjee...heres some info on him....and he takes time with his patents and explains and answers every question you might have..

http://www.hearthealthinstitute.net/dr- ... akanjee-2/

Good luck...
I think.....Therefore I am.!!!!!

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ROBO Pop
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Re: Shocked, now have PTSD

Post by ROBO Pop » May 15th, 2018, 3:41 pm

Lisa ~ Unfortunately one of the best, doesn't always mean a whole lot. My EP was one of the best in the country and nearly killed me. I can only guess why his abilities in my case didn't match his reputation but I learned the best aren't always. There may be a reason he set your device up the way it is, but I would definitely get a second opinion after an inappropriate shock storm like you experienced. The stress and anxiety are going to take some time for you to fully recover from, hang in and good luck
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

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mykidsmom
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Re: Shocked, now have PTSD

Post by mykidsmom » May 15th, 2018, 3:46 pm

I agree robo..the best cardiologist in oshawa almost killed me too..then wrote me off giving me maybe 6 months...12 years ago lol...thank god for 2nd opinions.
I think.....Therefore I am.!!!!!

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mrag
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Re: Shocked, now have PTSD

Post by mrag » May 15th, 2018, 5:07 pm

Someday someone will have to explain to me what "one of the best" means anymore. It sure ain't what I thought it meant as witnessed by virtually any person now working in Washington DC that were supposed to be "the best people." You want an EP with a verifiable and real history of success and a lot of experience. Sorry ladies, but that likely eliminates most women. Now if you want to be a test case and give a female a shot at fixing you, go for it. That is provided to help you find another opinion and not to troll the meToo groups.

I do not doubt what you've been told or what you think you heard. I do believe you really need a second opinion from someone far away and disconnected from your current medical team. Don't be afraid to ask the current team who they would send their mother or father to. I believe you will eventually hear a different story/explanation of what transpired in your case.

You are fully entitled to your PTSD and is very real. I had 10 shocks over a period of time eight years ago and can still have nightmares about them! In my case I am a big fan of ablations and an arch enemy of amiodarone.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

LisaCaissie
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Location: Oshawa, Ontario, Canada

Re: Shocked, now have PTSD

Post by LisaCaissie » May 15th, 2018, 7:39 pm

Thanks everyone, for your advice. I will certainly look into the things you told me. I definitely need the help. :)

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luvmydogs
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Re: Shocked, now have PTSD

Post by luvmydogs » May 16th, 2018, 10:59 am

Hi there. Welcome to our club. There are at least two of us on here that have heart issues now do to chemo. I too had a bone marrow transplant in 1993 which then caused congestive heart failure a couple years ago.

I am sorry about the shock storm. I have not experienced any shocks as of this date. I do know that PTSD is very common for people that this has happened to. You will surely get lots of input from people here. I hope you continue to seek out what you need to conquer these feelings.
Joanne (aka Jo)

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4EverHopeful
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Re: Shocked, now have PTSD

Post by 4EverHopeful » May 16th, 2018, 8:44 pm

Hi Lisa, welcome to the "family"! wavhi

My husband suffers from PTSD due to a work accident 10 years ago, so I thought I would comment on the PTSD part. The anxiety and panic feelings are very much real and unpredictable. So are the nightmares and random bad dreams. He didn't seek help right away after the accident, because his PTSD didn't surface until 18 months later. Because of the delay in receiving help and the daily chronic pain as a reminder of the accident, the prognosis is he'll have it the rest of his life.

The good news is(and answered prayer) after years of counseling and receiving the right mix of medicines, dosages adjustments, as well as acupuncture, he is managing it very well and is stable. He has learned to recognize trigger points/situations and how to cope more quickly. One comment his doctor made was had he had sought help right away, it would of been much easier to get under control.

I'm so sorry you are going through this! You have been through so much already. I would encourage you to seek help for the PTSD. The sooner the better. Hopefully you will only need counseling and maybe some bridge medicines for a short time to help you until things calm down, including that heart of yours!
Phyllis

God's prescription for the heart:
O LORD, You have examined my heart and know everything about me. You know when I sit
down or stand up. You know my every thought when far away. You chart the path ahead of me
and tell me where to stop and rest. Every moment You know where I am.
Psalm 139:1-3

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Suzanne
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Re: Shocked, now have PTSD

Post by Suzanne » May 17th, 2018, 10:40 am

Hi Lisa and welcome.

I'm so sorry you experienced a shock storm! I experienced an 8 shock storm and was terrified too…I lived every waking moment in fear, ultra-aware of anything my heart was doing and always on edge.

Your ICD should have never shocked you for afib! I also don't believe you should still be on amiodarone, to treat it.

May I ask what hospital your EP works out of?

I was originally going to Sunnybrook and then had myself transferred to Southlake. If I were you, I would only go to Toronto General or Southlake. These two hospitals have some of the best EPs in the world! You need a second opinion from someone who is an expert, the most skilled, someone you can trust. I learned the hard way what a difference the skill/knowledge/training of different EPs makes. Like Al (mrag) and ROBO said, I would definitely get that second opinion!! If I were you, I wouldn’t go back to whom you’re seeing now.

Did your current EP offer you any help for dealing with your ICD/inappropriate shocks related PTSD? There is a cardiac psychiatrist who works out of Toronto Western and also has an office at Leslie and Sheppard. It would be no charge to you, covered by OHIP. Cognitive behavioural therapy might also help.
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

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KansasAl
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Re: Shocked, now have PTSD

Post by KansasAl » May 17th, 2018, 12:08 pm

Hi,Lisa...It sounds like you might have afib with Rapid Ventricular Rate (RVR). I have this problem, anyway. The shocks weren't treating the afib but rather the RVR. In afib the atria are beating 450-600 beats per minute. If the AV node can't capture and control that rate or if there is an alternate electrical pathway between the atrium and ventricle you get RVR. Tikosyn or Amiodarone are the drugs of choice for this. Those drugs and another called Flecainide didn't work for me. I have had 3 ablations to stop the afib. This causes other problems too. An ablation for afib can cause a-flutter, in turn the ablation for a-flutter can cause the afib to come back. You can have an ablation that fixes your problem and then 1-2-3-4 years down the road a new electrical pathway pops up and you need a touch-up ablation. What I'm saying is drugs that work are a better way to go.

My ICD shock point began at 180 bpm and my RVR usually ran 150-190 bpm sometimes I'd get shocked, sometimes not. My EP raised my shock point to 208 bpm and that took care of my getting shocked save one time it made it to 215 bpm. Other than going to the hospital for a shock as none of the drugs worked for me. If the afib started over the weekend, I would have to live with it until Monday when they could do a TEE and there was a cardiologist to shock me (after they knocked me out). I've had this done about 12 times.

My new ICD, 2 years old, has the ability to try to pace me out of afib (different pacing than ATP for the ventricles) but that had to be turned on by my EP.
Didn't work for me, went into afib RVR, took 300mg Flecainide and sat around for about 3 hours with a 180-190 heart rate until the drug brought it down. Had my 3rd ablation shortly after. On the bright side, if the drugs didn't work initially, they will somewhat after an ablation.

Sorry you got whacked so many times but cardiology isn't like math where 2+2=4. If your team seems knowledgable and you like and get along with them I'd give them a chance. They may turn out to be the BEST (for you)!

Alan

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