Anxiety and mutliple zappings - how to adjust?

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SteveandLana

Anxiety and mutliple zappings - how to adjust?

Post by SteveandLana » December 13th, 2008, 6:02 pm

I'm going to post this information again, although I already posted it to our introduction. But that was before I realized introductions may not be read or responded to.

My husband Steve (age 57) received a pacemaker and defibrillator ICD unit this past July 2008. Two years ago he had an oblation surgery to stop atrial flutter. It seemed to be 100% successful and we thought he was in perfect health again. During a regular stress test and medical checkup in May it was discovered that he had episodes of V-fib – which he could not feel. His heart and arteries were in perfect condition, other than this sick sinus, and he has always been phsically active and a hard worker, but the doctors found his heartrate was running at a low of 30bps with sudden racing to above a 300 quiver.

Since the ICD implantation, he has not felt well much of the time due to being zapped so often. It has gone off a total of nine times in five months, with three of those zaps being within a 5 minute period of time. The hardest part is that we never know when to expect it. Hard physical labor is not always the cause. We have thought perhaps stress might be a factor, but the zaps have also come while relaxing.

He's having a hard time dealing with the emotional shock and the general malaise he feels for hours afterwards. I don't know how much of it is due to psychological trauma and how much is actual physical ailment. He is only on one medicine at this time: a beta-blocker called Metoprolol. After the first two shocks, the doctor changed his medicine to Solotrol, but it was after that that he got the 3 shocks within 5 minutes while walking across a parking lot. He said he often felt detached or light headed on the Solotrol, so the medicine was changed back to Metoprolol and the dosage increased to the current 300 MG level.

We don't allow him to drive anymore, and he lives in fear quite often. Each zap feels like someone whacked him in the chest with a 2x4 board. We are discouraged that our quality of life has taken such a drastic change and are wondering what we can expect for the future. We agree with a statement Sue wrote on this board: “ ...I am not so much afraid of death itself but afraid of being alive but not able to live what I would consider a productive life.” We're hoping that someone with similar problems can tell us how to deal with frequent shocks, or give us a suggestion to reduce the number of them.

Lana and Steve

karslake

Post by karslake » December 13th, 2008, 6:21 pm

Dear Lana & Steve,
I honestly can't tell you how to reduce the number of shocks, but I can understand how Steve feels. I had my first shock 11 days after the implantation of my first ICD now over 10 years ago. Since then I have had 26 shocks including two storms of 6 shocks each. I did truly live in fear. My husband was alive then and had no compassion or sympathy. If I shouted out while being shocked - I was told to stop making a noise! It wasn't until I found the predessor of this Board that I was able to talk to others who had received the same experience. I honestly say it/they saved my sanity.
Since my husband died in 2001 I have not received a shock (touch wood) so I often feel that it was stress that caused the majority of my shocks.
Get Steve to read some of these replies. I wish you both a zap-free Christmas and a lessening of fear and shocks in the New Year. Love & best wishes.
Eve & Blabbermouth 111

Lady Hawk
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Post by Lady Hawk » December 13th, 2008, 7:43 pm

Hi Lana

I think I can relate to what your husband might be going through. I too had really high expectations for the ablation procedure. Because I was a runner I hoped to return to the same level of physical activity that I had enjoyed for so many years prior to the onset of my heart condition. During my ablation I went into V-fib and woke up with paddle burns on my chest. Two days later I received my device - April 05.

I did not receive my first shocks until Feb 08 (in a grocery store) and again in Aug 08 - walking off the stage in front of 600 people. Other than feeling really tired sometimes and a little light headed I can't predict when my device will fire. I also don't pass out when I experience V-fib although I can tell that something is not quite right.

I struggle daily with the fear of the device firing. I even experience flash backs which causes my heart to start to race - not a good thing :( Physically, it takes me several days to get back to "normal" after a shock but this varies for each person.

I don't know any secrets to insure that your husband won't get shocked. Believe me if I did I would shout them to the world! The people on this web sight have been invaluable to me - knowing that I can come here and share my fears with others who have similar experiences. For me this "healing" is a daily process, mentally and physically. Stress, fatigue and my electrolyte balance are critical factors for me but again, I think it is very different from person to person.

Talk to your Doctors to insure that your husband's device is properly set - mine was not and had to be adjusted. Talk to us, believe me this helps! Take it one day at a time...!

Hope to hear from you again soon.

Lou
Live, Laugh, Love

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Ozchrissy
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Post by Ozchrissy » December 13th, 2008, 8:14 pm

Hi Lana and Steve, so sorry to hear you are having such a hard time of it. I have been pretty lucky, over two years zap free, but had my first shock last September. All devices are different, I now think that my device actually intervenes to prevent my heart rate from getting too high, but will zap me if it gets over 190 bpm. As we have been discussing recently on here, some devices are actually designed to ramp in to prevent the zap.

When was the last time your husband got zapped? Has the increased medications helped?

As for stress being a precursor to being zapped, it can't help. I would definately talk to your medical team about this situation and maybe they can help your husband to cope with the anxiety. There are medications to help him relax more and relieve the anxiety.

As others have said, you are not alone and there is obviously a wealth of knowledge on this board,, so you are likely to get lots of support from here.

Cheers, Chris
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

Lacey
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Joined: December 10th, 2008, 8:18 pm
Location: Marshall Mo

Post by Lacey » December 13th, 2008, 11:00 pm

Is his shocks from v tech or exersise induced as they said mine was. I got mine in July 2008 and have had three eposides being shocked 5 times each time. I mean its crazy being shocked one right after another cause the first time it did that i didnt know if it was going to stop shocking me cause as far as i knew it was only supposed to shock me once but it was not v tech ..
lAcEY

SteveandLana

Post by SteveandLana » December 13th, 2008, 11:04 pm

The last time Steve got zapped was just last night. He hasn't come out of the funk all day today. The increased medication seemed to help for 6 weeks (no zaps from Oct 27 to Dec 9 -- but two since then). Something has obviously changed now.

I think we'll ask the Dr. about taking the extended release Motropolol again, and also ask about getting something to treat the anxiety.

He complains that he has pressure or a heavy feeling in his abdomen, just below his breastbone, after a shock. Does that sound common to anyone else?

Lana

SteveandLana

Post by SteveandLana » December 13th, 2008, 11:08 pm

Lacey,

The cardiologist says the shocks are from V-fib and that the defibrillator "is doing it's job." Steve is just having a hard time understanding why he felt fine before they told him he had problems six months ago, but now he is apparently trying to go into cardiac arrest all the time.

I know that he feels he is dying, but I think a lot of it is just anxiety and fear. But whom am I to say? I am only on the sidelines watching and worrying with him.

Lana

Lacey
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Joined: December 10th, 2008, 8:18 pm
Location: Marshall Mo

Post by Lacey » December 13th, 2008, 11:09 pm

Why is going off so much??? V-tech or what?? Yeah i had to ask for anxiety med and sleeping meds cause i cant go to sleep cause i stay awake worrying about if my defib going to go off. wish him the best of luck and tell him he is not alone there are plenty of us the same way... Best of luck
lAcEY

SteveandLana

Post by SteveandLana » December 13th, 2008, 11:16 pm

Chris wrote: "All devices are different, I now think that my device actually intervenes to prevent my heart rate from getting too high, but will zap me if it gets over 190 bpm. As we have been discussing recently on here, some devices are actually designed to ramp in to prevent the zap."

Steve's pacemaker / defibrillator was originally set to ramp up when his heart began speeding up, but the doctor quickly turned that feature off because it zapped him a good one while still in the hospital after the surgery. They found that the ramp up actually made his heart speed up even faster, rather than the pacemaker getting ahead and slowing his heart down. They have also set the defibrillator to go off only when his heart is in the quiver mode (V-Fib) for over 20 seconds, hoping that it wouldn't go off so often. Maybe his heart (the sick sinus) is deteriorating quickly?

I appreciate all the feedback you folks are giving me. It helps!
Lana

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sunny4az
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Post by sunny4az » December 14th, 2008, 12:39 am

When I first got my defibrillator, it shocked me three times during the first 9 months, each time during moderate physical activity. All of the shocks were deserved, delivering a life saving therapy. After each shock, I went to my electrophysiologist and he told me to be patient until he fine tuned the device and tried different meds.

Apparently he finally found the right combination of device settings and meds as I have not got a shock in over 4 years.

It is stressful not knowing if the ICD is going to shock you or not, especially during physical activity. I finally pretty much got over that my going to cardio physical therapy where I exercised and was electronically monitored as they increased my activity level. They proved to me that I could pretty much resume normal activity without worry. But, getting shocked is always in the back of my mind and when doing any physical activity and feeling tired, I sit down and take a break.
Joel in sunny Arizona


Medtronics Maximo 7232CX. Mexiletine 150MG 2X, Coreg CR 40MG 1x, Lisinopril 2.5MG 1X, Plavix 75MG 1X

3-life saving therapies and 1 electrical storm w/8 zaps

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mnhynes
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Post by mnhynes » December 14th, 2008, 12:44 am

I can truly sympathize with the stress and anxiety you both must be going through. I've only had 3 shocks and for each it took time to not worry about them constantly. Even 4 months later I still have moments where I stress out. With so many shocks, I would really push your doctors for more adjustment in medicines or something. Hopefully they can get to the bottom of it.

I do know that meditation and bio-feedback (controlled breathing exercises) can help ease the anxiety.

Best wishes for no more shocks.
Mike

Lacey
Posts: 141
Joined: December 10th, 2008, 8:18 pm
Location: Marshall Mo

Post by Lacey » December 14th, 2008, 2:28 am

Wow im sorry to hear that he getting so much shocks especially from v-tech... I mean since he just got his just like i just got mine and mine was going off so much its because they had to tweek on it and get just right for me .... Which they had it set 150mpb now it set 180 mpb.. I am so sorry i understand why you and am him are freaking out. Hopefully everything turns out great......My prayers are there with you ...
lAcEY

KROB

Post by KROB » December 14th, 2008, 10:44 pm

Sorry to hear about all of the shocks. I know that anxiety is the worst part. It has been 4 months since my last shock, but even today when my heart jumped out of rythmn, I freaked which caused my heart to race faster and it took an anxious moment or two waiting to see if the shock would come. I hope that a combination of meds could do the trick. That is what it took to get my vtac under control.

I hope that they get it right. Hang in there and keep pressing the docs for better answers.

Kevin

SteveandLana

Anxiety and multiple zappings -- a change in medicine

Post by SteveandLana » December 19th, 2008, 2:54 pm

Hello everyone,

We appreciate the concern you have shown for my husband Steve. We went to his doctor yesterday, (after he was zapped by his ICD twice in the past week, including while relaxing). They have already tried to control his V-Tach with Motropolol and Sotalol, and neither is preventing the shocks from coming. He has been unable to function since this past week's shocks, and complained of several physical ailments, including fuzzy vision, lump or knot in his stomach, lack of appetite and fogginess in his head. I knew a lot of it was caused by anxiety (understandably). The doctor gave his prescriptions for Prozac (which takes several weeks to be effective) and Xanax for immediate relief of anxiety. He also added Amiodarone for treating the arrythmia and V-Tach. He explained there could be serious side-effects, including lung and thryoid problems, but that the "possibility" of problems was better than the "sure" problems Steve is having now. I know we couldn't really live the way things were going. It was incapacitating him.

I think Steve was surprised at how much better he felt just 30 minutes after taking a Xanax. Of course, he knows it can be habit-forming, so he is reluctant to take it very often, but I think he realizes he will need to take it several times over the next few weeks until the Prozac becomes effective.

Have any of you heard about Dronadarone? In checking out what I could find on the Internet concerning Amiodarone, I found that they are conducting studies of Dronadarone and that it may be just as effective as Amiodarone but without the serious side effects. I wondered if anyone had participated in the studies or heard anything about this new medicine.

We also had a frank conversation with the technician who reads the ICD monitor. She told us that if the ICD was NOT shocking Steve, that he would have died by now. His heart was going into a stall and not pumping blood. Steve is only 57 and was in perfect health and very active until last spring when this problem was unexpectedly discovered. He had had no symptoms at all. But apparently his heart sinus node is deteriorating quickly. I guess we should be very thankful that 1) it was discovered in time and 2) that the ICD has prevented him from dying (although being tortured to death is not much better). Hopefully this Amiodarone, even with it's possible side effects will give us some good years yet.

I hope that by sharing our experiences, and getting feedback from all of you, that we can help others who come to this support group with similar problems.

Lana and Steve Archibald
Utah

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Lazydays
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Steve & Lana

Post by Lazydays » December 19th, 2008, 3:37 pm

Sorry to learn of Steve's recent shock and the variety of ailments that you are suffering from at present. I have never heard of Dronaderone so cannot help you with that.
I was on Amiodarone for about a month and felt quite nauseus taking it. I also developed chest pain and felt really tired. When I complained to the Doc about it, I found out that once I had the ICD implanted I could come off. Having read much about Amiodarone I was more than happy about that. Some of the potential side effects are quite scary but we are all different and react differently to drugs. I know there are a number of forum contributors who have been on Amiodarone for a number of years without noticeable side effects. Also from what I have read it is one of the best drugs for Arrythmias.
If you have not already done so, do a search on Amiodarone on this forum - you will find it is a well discussed drug.
Hope things improve for you soon Steve.
Gary

Life Can Sometimes Be A Shocking Experience

March 1994 - MI
June 2003 - Stent
July 2008 - VT - Stent & ICD fitted
Dec 2008 - Appropriate shock
Sept 2011 - Ventricular Ablation (failed)
May 2012 - Ventricular Ablation
May 2013 - Ventricular Ablation (failed to induce VT )
June 2014 - Ventricular Ablation
25mg Spirolactone
5mg Bisoprolol
10mg Ramipril
40mg Pravastatin
Warfarin
Disopyramide - 400 mg

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