Hello all,

My EP increased my dosage of Amiodarone from 200 mg to 400mg on Friday. On Saturday morning after my morning dose, I experienced almost immediate flushing, more irregularity, dizziness, feelings of my heart being (in my throat), etc. Later on, my hands started tingling. I called the Drs service who cut my dosage down to 300 mg. I only took 200 mg both Saturday and Sunday because I was still feeling quite poorly. My blood pressure also started dropping, and it had been stable for a few weeks now.

I talked to both of the cardiologists yesterday, and one says it sounds like the Amiodarone. The other (EP) says Amiodarone doesn't work like that, explaining it is in the system for a long time. That's why they hospitalized me when they started it, giving 'loading doses'. I have been very sensitive to all the cardiac meds, so she says I may just be sensitive to it. All I know is I started feeling very bad on Saturday after increasing the dosage.

I've now been cut back to my original dosage of 200 mg, which is not controlling what appears to be a lot of PVC's. They are talking about a PVC ablation.

Anyone else experienced this?

Thanks..
Angel
 
  
 
They are going to perform an ablation just for pvcs?

I am assuming if your on amiodarone you have other rhythm problems besides pvcs. I think everyone would agree with me by saying amiodarone use is not appropriate if all they are trying to controll are pvcs.

I don't have a link readily avialable, but you are aware of the possible long term side effects of amiodarone? If not, google something like FDA and search amiodarone from there. Or just google amiodarone side effects. There is plenty of info. Make sure you educate yourself.

I took 200mg daily of amiodarone for 7+years without any problems. I don't take anything now. I personally would not take amiodarone unless all other medications have been exhausted and I was still having life threatening VT, not pvcs.

Hope this helps.

Well, my goal this last year was to make it to 8 years and I am VERY happy to say I made it!!!

I received my 1st Medtronic ICD 8 years ago today June 18th. I hope this is encouraging to those of you who have not had your ICD's very long. When it was originally implanted, the EP told me 7-10 years is the average life, but as I read online after the fact, it didn't seem like many lasted that long. I guess old Doc Fisher was right on luckily for me. The battery life has been holding steady for the last year. (FYI.. It has fired 7 times in the last 8 years but has not paced me at all, so that is helpful in battery life.)

OK..... now do I dare try to make it to 9 or even 10.....heck why not ?????

Julie in Cincy
 
  
Congratulations! I wonder what the record is for device longivity.....

Ron
 
  
Duff..you want to take a stab at that question???

Jules
 
 
ZapDuff
Site Admin
 

  Mon Jun 18, 2007 5:50 pm Post subject: Hmmmm Reply with quote
Congrats Julie... I have NEVER known anyone to have a device last as long s yours has. My average is exactly HALF of yours - 4 years.
 
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Ron Page


 
Could we do a survey of people's devices and how long they have lasted...maybe by brand and model?

Ron
 
 
flyingsushi


 
My 1st one last 2 yrs to the month.

2nd one is still going with about a year left. Implanted 12-2002.

St.Jude
Not sure exactly which one.
 
  
My first (a St. Jude) was implanted 5/2005. Last time it was interrogated, I was told I still had 5 years left. We'll see.

Ron
 
  

  Tue Jun 19, 2007 6:16 pm 
Here's a fairly extensive survey...

http://www.medtronic.com/crm/performance/references/mdt_icd_survival.pdf
 
 
zzwoman1

 

  Thu Jun 21, 2007 3:04 am 
MIne lasted 4 years it was a St Jude
_________________
Don't let your wishbone grow where your funnybone ought to be.
 
 
Harold
 

  Sat Jun 23, 2007 3:25 pm Post subject: 8 yrs !!! Reply with quote
Julie- ya beat me ! (see my recent post)

Wow , 8 yrs, even with zaps.

I have had some brady pacing, no zaps.

I had something 'lumpy' going on inside at the scar line , which itself was papery thin.. in fact I thought it was too thin to contain the recently removed device.

So the doc took care of that. Good luck, keep your eye on the device.

Mine was deropping very gradually for years, then it fell of the cliff voltage wise from a 5.17 reading in Feb.

Since you are not zap free, I feel you have to think in terms of being a little pre-emptive instead of looking for the world record.

Just my humble opinion..

Regards,

Harold
  
I hear you on being proactive, but there is this VERY frustrating thing called health Insurance and they would not look kindly on replacing an ICD that is still functioning properly. My nurse and I had that discussion back in Feb when I was planning a trip to Fla as I did not want to be away and have the battery alarm go off. But I understand once that happens I have approx 30 days of function remaining. So they say!

I am just kidding about the 10 year thing, but I do have to say I am very much an optimist and have a positive attitude about my whole situation and since I have made it this far???? Smile

Julie in Cincy
 
  

I am wondering what model it was (my recently departed was a 7221-D medtronic) , also were there any particular settings which may have kept it alive longer?

I know when I detoured my care briefly at Deborah Hosp. in NJ they made 'an adjustment' which may have prolonged the life of the device.

I think it may have had to do with the frequency of capacitor formation - i.e. if you recharge the capacitor less often, then your battery will not be taxed as much.

Anyone out ther with real knowledge I know I'd be interested.
_________________
Regards,

Harold
  


  Sun Jun 24, 2007 9:32 pm 
Julie and Harold, you inspire me! My first ICD lasted 2 years 8 months - it was a Ventritex, and I've been told they don't even make them anymore. My current one will be 7 in September, and I'm hoping to make it to the 7 year mark. In December Medtronic said it should go another 4-8 months. Reading your posts, I'm going to raise my sights.
 
 
Harold


 
Janet,

That's what we estimated, essentially, for my device back in Feb. We figured one or two more interrogations (4 months apart) could occur before replacement time.

As I mentioned, the voltage was dropping rather slowly for 2 or 3 years after 'the adjustment'. At my Feb 2007 interrogation, it was just above the elective replacement indicator(ERI). This month it was just about at the end of life indicator. i.e. a sudden, larger drop in voltage.

In my case (never been zapped) I was willing to wait until mid-July to replace it but a window of opportunity opened up so I took it.

My thoughts, in view of the above, is that you should stay on top of the situation, i.e. perhaps get interrogations at shorter intervals, especially if you have ever been zapped or have an underlying condition which could very well cause a zap.

Your dr. should be able to discuss with you, if that has not already happened..
_________________
Regards,

Harold
 
  

My original ICD is a GEM model 7227. Smile

Julie
 
  

  Sat Jun 30, 2007 12:06 pm 
My first Guidant lasted 3yrs 3months then the battery went literally overnight - mine was a defective one. The capacitor failed completely - so low it only managed one lot of beeps. It couldn't even be interrogated properly.
I've had this one since the mergency replacement in september 06, but am paced 80% of the time, so really not sure how long it'll go. The clinic keep saying 7 years, but I'm pretty sure that's without pacing.
Karenb

just got my first icd yesterday.medtronic virtuoso for hcm. pretty good pain for most of the day but taking pain pills so pain is subsiding and am up typing so not too bad ay? pete
 
  

  Fri Jun 29, 2007 6:51 pm  the Zapper, zaplife.org
Pete -- Glad to see you're up and around. Take it easy. Read some good books or rent some movies. Keep your arm down. Your biggest "pain" may be the seatbelt when you drive! (For women it's bras, but I hope you don't have to worry about that one.) Wink
 

I'm new to the group have a diagnosis of dilated cardiomyopathy and V-Tach. Medtronic defib/pacemaker implanted 3/12 of this year and has shocked me once. It has been a struggle with medications from the very beginning. I was put on Altace 2.5 mg and Coreq 3.25 mg, then added Amiodarone in April due to the shock and frequent V-tachs. They pulled me off of both Altace and Coreq for 6 weeks due to very low BP. Finally the BP stabilized and I'm back on Altace only for now. I've been on it now for 17 days and seem to be tolerating it well so far. They will introduce Coreq again in a month.

I had finally felt like I was turning the corner (blood pressure and cardiac meds), but have continued to struggle with arrythmias. My EP is talking about an ablation but first wants to try increasing my Amiodarone to 200mg 2x which I started yesterday.

I hate this stuff. I feel dizzy, more palpitations than before, a hot, flushed feeling and my heart pounds wildly when I stand up. It was ok when I took it just at night...I was home for the evening, but taking it also in the am is troubling to me. Maybe I'll get used to the increase, but I'm concerned that Coreq will also be in the morning - adding to my side effects.

The ablation procedure for my type of arrythmia is only 50% successful, but if I could do it today, I would. The EP wants me to try the increase meds for 2 weeks, so I'll try to hang in there.

Any thoughts? Help!

Angel
 
 
 

  Sat Jun 23, 2007 1:12 pm 
Angel -- Welcome. I don't know anything about your other meds, but amiodarone is the LAST RESORT in medication. It has numerous side effects (go to webmd.com or drugdigest.org and read), many of which can be fatal.

As far as ablation, 50% is pretty good odds, and, if it is successful, it will improve things immensly. I had one, and since then have had no problems with racing heart, shocks, etc.

Many of us are on Sotalol, and I don't know if it's for your condition (again, read up on the websites), but is an "oldie-goldie" that has been proven, with few side effects (mostly tiredness, but we can deal with that, right?)

Study up, and confront your doc. Don't let him bully you into something that's not good for you. If he won't listen, find another doc! If you're willing to tell us where you are (even just state), somebody may know a good doc in your area.

Good luck, and keep us posted.

Jana
 
 
angelnote



  21 Jun 2007
  5


  Mon Jun 25, 2007 8:09 am Post subject: New member and medication problems - Help! Reply with quote
Jana,

Thank you for your response. I have had many more good days than bad in the past few weeks, and Friday was a good day. Unfortunately, that was when I saw my EP doctor, so I don't think she knows how bad the 'bad days' really are. She stated that most people who receive an ablation are much worse and don't look as good as I do (or did).

I have had a horrible three days, and am debating over what she said. I don't want to do an unnessary procedure, but I feel awful. It's hard to know whether I'm not giving the meds (or my heart) enough time yet, or whether I'm being impatient and wanting to feel better right now. How do I know the difference?

I have been extremely happy with both of my doctors (EP and cardiologist), and don't want to change. However, this is my body and I know how I feel, which is crummy.

I live in North Texas.

Angel
B

  Mon Jun 25, 2007 11:18 pm 
Angel -- I will tell you right now that your EP is WRONG. I've had an ablation; so has my sister, and several of my friends. We all feel much better. My sister's wasn't as successful, but only because one side of her heart is 5 times normal size, she has an artifical valve, and is just generally not heart healthy. The combination of the ablation and sotalol changed my life completely. I feel better most days than I did pre-ICD (when nobody would believe me when I told them my heart was messed up.) After I went through SCD (sudden cardiac death), they started believing me:)

If you feel awful, don't let them tell you it's normal. I don't know much about dialated cardiomyopathy, so I really can't tell you if it is normal or not to feel awful. I guess the question is, did you feel awful before the ICD and all the meds? How did they find the problem, etc. The ICD shouldn't make you feel awful, so if you didn't before, you shouldn't now.

Did you look up amio? Present her with the side effects and demand an answer as to why you're on it. Do research. Go in prepared. Take somebody with you to have a second set of ears for the answers, and make it somebody who is a little forceful so they will make sure you get the answers. Take your research. I know the internet isn't the authority on everything, but the two websites I told you about seem to be pretty factual.

Don't give up. If the treatment is making you feel worse, then maybe the treatment isn't correct or necessary. The ICD will save you if you need it.

Jana
B

  Tue Jun 26, 2007 5:46 am Post subject: New member and medication problems - Help! Reply with quote
Thanks, Jana.

When the EP doctor mentioned most people having an ablation feel and look worse than I do, I meant before having it done. I know many people have had success with the procedure and I'm hopeful it will be the same for me. I have just been doing extremely well, and she doesn't want to put me through another surgery, if I don't need it. I've been in the hospital 5 times since March and have been through quite a lot.

The worsening of my symptoms started last Saturday, when the Amiodarone was increased. Even though this didn't make sense to the nurses I talked to (something about how the med is in your system for a long time) I know it has everything to do with this medication. I'm back on my original dosage and we'll see what that does.

I think your idea of going in with questions and a second party is excellent and I intend on doing just that.

Thanks....

Angel
B


  Tue Jun 26, 2007 11:28 am 
Meds were the hardest thing for me to get used to after I was first diagnosed with Dilated Cardiomyopathy and V-tach/Afib. After 3 to 6 months I think you start to get used to the side effects. Something else to be aware of is the length of time it takes for your heart to return to a normal size. It took about a year on the drugs for my heart to return to a more normal size and for my EF to get back over 50. As that happened the incidents of V-tach dimished. Get all the answers you need from your doc, but also understand that some of this will just take time.
B


  Tue Jun 26, 2007 6:20 pm Post subject: New member and medication problems - Help! Reply with quote
David,

You are absolutely right about giving it time. Today has been a better day - heart wise. I realized that tomorrow will make it 3 weeks that I've been back on Altace, and doing well on it. That's progress from 6 weeks ago when I could barely get out of bed.

I've decided not to rush into the ablation even though the arrythmias are horrible. My heart has not had a chance to start recovering yet given my trouble with medications. If I can hang on with meds and arrythmias, maybe it will get better on its own.

It really helped to hear your story, just knowing someone with the exact same diagnosis that is better gives me hope.

Thank you,
Beth
B

  Tue Jun 26, 2007 6:32 pm Post subject: BEFORE GOING TO THE DOC Reply with quote
The old guy here... ICD since Christmas +2days, 1994... on ICD#4 looking for EP#5... wired for 13 years come the winter holidays.

For the first several years... I came home from every doctor appointment angry that I did not get ALL the answers I wanted. So... learn from me now: In the week or so before going to see the doc or technician... start making a list - write it ALL down - of stuff you want to know or nag you with uncertainty.

While you are getting answers... new questions WILL come to mind. Add them immediately while you listen. Do not let the doc leave the exam room until you are satisfied your "to do" list is completed.

Jana offered some key wisdom earlier in this thread: If you are NOT getting the answers you want, need, and deserve.... FIRE YOUR DOCTOR PDQ! Our lives are too short for our bodies to not be treated properly by the health care professionals who are getting paid well to do what's right. Wasting time getting on with a better alternative will certainly shorten your life and cause your friends and family to miss you way too soon.

And if you have any energy or time left after meeting your health care needs, family and/or occupational responsibilities... consider joining me on the activism trail to help others coming up this rocky road behind us.

Start demanding changes in American (world?) health care policy... away from disease maintenance as we have now ===> to a real system of health care. Part of that means we quit accepting treatment of our symptoms (endlessly to supply profits to the pharmaceutical and device makers as well as the corporate hospital machine) - it's time we push government to get out of the way and let the scientists move forward to find the cures we desperately need to live.

May we never again give someone the keys to the White House who will stagnate vital stem cell research.. not once... but every chance given to really take a stand for life - that's OUR lives. The clock is ticking for most of us. Get a commitment from all federal lawmakers (Senators and Congress members) who represent you to work to override future Stem Cell vetoes. If they will not give you that promise... give them a promise to help send them into retirement.

Thanks for letting me share my thoughts with you...
Stay well...
ZapDuff

Well, I apologize to all of the 'old timers' here for having been so absent the last couple of years...combination of employment depths (5 yrs) to relative heights(recently) , now working in D.C. area, commute to NJ on weekends, occasional rehearsal in NYC.
Plus my Sunday a.m. softball game.

Just got my second replacement . The 7221-d (Medtronic Jewel?) went below ERI(4.91v) and was just about at 'dead' voltage. It had been going down very gradually to about 5.l7v in February, then 4.61 or so in June.

I have to go read Julie's post - 8 years ! I thought 7.5 was darn good !

As before, the replacement (mine is still in the abdomen, 'cause back in 1995 devices were too big to place in the upper chest) was 'a piece of cake' - just some minor soreness.

They kept me in overnight because they put me on 2 rounds of IV antibiotics...not sure why ;last time I went home same day.

Well, that's it in a nutshell...

Regards,

Harold
B
the Zapper, zaplife.org
  Mon Jun 25, 2007 11:22 pm 
Harold -- Good to hear from you again! Glad to know you're still singing, but that's quite a commute. Are there no choirs in DC??

Jana
B

Thanks for the 'welcome back' !

The D.C. area is full of choral groups, including the famous Alexandria Harmonizers, who will follow us ('us' being the Big Apple Chorus of NYC)on stage at the international convention/competition of the Barbershop Harmony Society, taking place in Denver on July 4-6 or 7th.

For great examples of the best in this hobby, listen to the Westminster Chorus and alos the Vocal Majority over at www.youtube.com .
_________________
Regards,

Harold

hello all. I introduced myself about a month ago after my doctor told me she thought i needed an icd for hcm. i now have a date of june 27th for icd implant. after some anxious time researching on the web, and reading many of your posts and posts from the hcm site, i have come to a surprisingly calm place and i feel i know what to expect thanks to all that have written about their experiences both good and bad. thanks, Pete
B

  Sat Jun 16, 2007 7:40 pm 
Well wishing you all the best for getting your ICD let us know how you go. I'm glad I have mine was scared of it at first but now know how lucky I am to have it otherwise I wouldn't be here typing this message to you. Hope all goes well
Jenni Very Happy
_________________
Don't let your wishbone grow where your funnybone ought to be.
B

  Sat Jun 23, 2007 3:29 pm Post subject: HCM no joke Reply with quote
Pete,
I think HCM is a good reason to get an ICD.
Good luck .
This is a great place for support

Regards,
Harold

  Mon Jun 25, 2007 11:32 pm 
Pete -- Good luck on Wednesday. Let us know how it goes. Remember to take it easy for awhile, keep the arm down, etc. Don't be shy about asking what you may think are stupid questions, because we've all had them!

Jana

(originally posted in response to Julie's 8th anniversary )

Julie,

I am wondering what model it was (my recently departed was a 7221-D medtronic) , also were there any particular settings which may have kept it alive longer?

I know when I detoured my care briefly at Deborah Hosp. in NJ in 2004 they made 'an adjustment' which may have prolonged the life of the device.

I think it may have had to do with the frequency of capacitor formation - i.e. if you recharge the capacitor less often, then your battery will not be taxed as much.

Anyone out ther with real knowledge I know I'd be interested.
_________________
Regards,

Harold


  Sun Jun 24, 2007 2:46 pm 
Now that you mention it, the technician who examined my St Jude V-196 adjusted it about 6 months after implant and said that the adjustment would extend the battery life. I << think >> she told me that the capacitors wouldn't recharge as often with the reset, and that therapy is much more likely during the first month or two after implant because doctors are tinkering with settings and adjusting them to the individual.

MONDAY, April 30 (HealthDay News) -- The wires through which implanted defibrillators deliver the electric jolts that keep hearts beating normally aren't as reliable as many might think, a German cardiovascular research center reports.

FULL STORY in Washington Post
B

  Mon May 07, 2007 5:54 am Post subject: Here's an interesting look at that report by a EP doctor. Reply with quote
This adds a little more positive note to the German report.

http://drwes.blogspot.com/2007/04/defibrillator-lead-report-misleads.html
B

  Wed May 09, 2007 5:23 pm 
Glad to see that this topic is getting about as much attention as it deserves (which is very little). Horrible reporting of a questionable study.
 

 elected to not change leads after 12 years Reply with quote
Well, its a bit late, I just had my second ICD replacment.
In the last 2 years, a thrombus (clot) was found on my ventricular wall, so I have been taking coumadin for that.

Part of my decision to keep my 12 year old leads in place was:

1) if there is a clot, I don't want anything going on to disturb(read: break) it within the ventricle. Lead removal OR placement could be such a disturbance.

2) the leads have functioned, were tested at implant time, and are within spec.

3) Removal of old leads seems to me a potentially problematic process; leaving them in place and placing new ones appears to me as 'crowding', especially in view of a known clot.

4) I contacted the manufacturer and they claimed that there are people out there with leads which continue to function after 18 years

5) I am quite active, and no lead fracture has occurred as yet.

6) On reading the articles mentioned, I probably have urethane insulation, which seems to last longer(not to ignore the 'hostile' body environment).

That's what went into my decision.

If I left anything out, feel free to chime in.