Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 Wow Heidi, I especially needed to hear this today. Thanks! ~ Gretchen Heidi Willey-Hersey wrote: >Since I choose to spend my life in positive thoughts and feelings and > As my path is to be who I am and know > that I am someone special. To know that we all are special. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Talk with your Doctor and let him know your symptoms, see if there are alternatives to the medications you are on. I found that my Doc listens when I let him know my symptoms, instead of just saying "I feel lousy", I let him know, I am dizzy, my blood pressure feels too low, I am very fatigued etc. Just keep talking and keep trying to learn your options.... Hang in there. ~guin being positive I know alot of you are out there just like me. Have you had a cardiacarrest. I would love to hear from anyone who can tell me when thefreak out mode ends.I had my ICD since january and it has gone off for good reason V Tactwo times. I am also on amiodarone and just feel lousy. Is thereanyone out the with experience on this drug. I know it is usually alast resort type of med but the side effects bite.I really want to stay positive and wonder if any of you out there havesome good tricks.thanks so much Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Hello, I have been on Amiodarone for over 10 years.....but a small dosage. It was a last resort drug for me. The doctors had tried all the other meds available. The doctors are now trying to lower the dosage. They are increasing my Toprol so they can lower the Amiodarone. I guess they are concerned about me being on the drug for so long....I am 42. The side effects that bother me the most is sun sensitivity. It is impossible to enjoy summer. I had two cardiac arrest before being implanted with an ICD. I have found that after an cardiac event, I go into "freak out mode". As time passes and I get further away from the event....my life slowly returns to some normalcy. Two months ago I received four shocks...my first....I had panic attacks...had to go on Paxil....now I am off the Paxil because I felt lifeless. I have to say that the Paxil was a big help during the attacks! Hope this helps, in Vermonthkauffman <hkauffman@...> wrote: I know alot of you are out there just like me. Have you had a cardiacarrest. I would love to hear from anyone who can tell me when thefreak out mode ends.I had my ICD since january and it has gone off for good reason V Tactwo times. I am also on amiodarone and just feel lousy. Is thereanyone out the with experience on this drug. I know it is usually alast resort type of med but the side effects bite.I really want to stay positive and wonder if any of you out there havesome good tricks.thanks so much Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Hi - I am on 200 mg per day of Amiodarone for about ten years because of Afib. However, it was not keeping me in sinus so about one year ago my "then" cardiologist took me off of it and put me on just Coumadin. He said come back in six months. Well, about five months later because of a car accident I found out that I had vtach. They put in a ICD and put me back on Amiodarone and Toprol and all the other heart failure medicines. My EF was 15. Now it is 35 and has been that way since last summer. My "new" cardioloigst wants to keep me on Amiodarone since now my heart is in sinus rhytmn all of the time. My doc says he doesn't understand why, but I will take it. I have liver, eye, and lung checks because of all the possible side effects of this drug. However, I have not had any problems with it that I know of....Take care, Darlene Re: being positive Hello, I have been on Amiodarone for over 10 years.....but a small dosage. It was a last resort drug for me. The doctors had tried all the other meds available. The doctors are now trying to lower the dosage. They are increasing my Toprol so they can lower the Amiodarone. I guess they are concerned about me being on the drug for so long....I am 42. The side effects that bother me the most is sun sensitivity. It is impossible to enjoy summer. I had two cardiac arrest before being implanted with an ICD. I have found that after an cardiac event, I go into "freak out mode". As time passes and I get further away from the event....my life slowly returns to some normalcy. Two months ago I received four shocks...my first....I had panic attacks...had to go on Paxil....now I am off the Paxil because I felt lifeless. I have to say that the Paxil was a big help during the attacks! Hope this helps, in Vermonthkauffman <hkauffman (DOT) com> wrote: I know alot of you are out there just like me. Have you had a cardiacarrest. I would love to hear from anyone who can tell me when thefreak out mode ends.I had my ICD since january and it has gone off for good reason V Tactwo times. I am also on amiodarone and just feel lousy. Is thereanyone out the with experience on this drug. I know it is usually alast resort type of med but the side effects bite.I really want to stay positive and wonder if any of you out there havesome good tricks.thanks so much Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Hello and Darlene; I was on different meds when i first got my ICD #1 in 2001, after 49+ shocks finally 4 months later they put me on amiodarone, Toprol, Lisinopril, coumidine(i was on it from 1994), digoxin, lasik and potassium tablets. Since may 2001(knock on wood) no zaps. Amiodarone is a very dangerous miracle drug. i feel lucky to be on it for 6 years. I think it is the main reason why i did not even have a non sustained ones since may 2001 except for one episode. I just feel blessed that when i was at the end of my rope from getting shocked so much and about to give up and tell them take the machine out, I met Jon Duffy, , Sharon, Guin and lots of others that were here. They showed me how to take 1 minute at a time and how blessed i was. Since then I live in the Now (like the Dog Whisperer Sezar Milan says). I feel much better and happier. Good luck. TURK Darlene El Tohamy <darljl2002@...> wrote: Hi - I am on 200 mg per day of Amiodarone for about ten years because of Afib. However, it was not keeping me in sinus so about one year ago my "then" cardiologist took me off of it and put me on just Coumadin. He said come back in six months. Well, about five months later because of a car accident I found out that I had vtach. They put in a ICD and put me back on Amiodarone and Toprol and all the other heart failure medicines. My EF was 15. Now it is 35 and has been that way since last summer. My "new" cardioloigst wants to keep me on Amiodarone since now my heart is in sinus rhytmn all of the time. My doc says he doesn't understand why, but I will take it. I have liver, eye, and lung checks because of all the possible side effects of this drug. However, I have not had any problems with it that I know of....Take care, Darlene Re: being positive Hello, I have been on Amiodarone for over 10 years.....but a small dosage. It was a last resort drug for me. The doctors had tried all the other meds available. The doctors are now trying to lower the dosage. They are increasing my Toprol so they can lower the Amiodarone. I guess they are concerned about me being on the drug for so long....I am 42. The side effects that bother me the most is sun sensitivity. It is impossible to enjoy summer. I had two cardiac arrest before being implanted with an ICD. I have found that after an cardiac event, I go into "freak out mode". As time passes and I get further away from the event....my life slowly returns to some normalcy. Two months ago I received four shocks...my first....I had panic attacks...had to go on Paxil....now I am off the Paxil because I felt lifeless. I have to say that the Paxil was a big help during the attacks! Hope this helps, in Vermonthkauffman <hkauffman (DOT) com> wrote: I know alot of you are out there just like me. Have you had a cardiacarrest. I would love to hear from anyone who can tell me when thefreak out mode ends.I had my ICD since january and it has gone off for good reason V Tactwo times. I am also on amiodarone and just feel lousy. Is thereanyone out the with experience on this drug. I know it is usually alast resort type of med but the side effects bite.I really want to stay positive and wonder if any of you out there havesome good tricks.thanks so much Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos. Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 Thanks so much everyone!!! It makes me feel so good that all of you are here for support. I am so thankful that I found this group.. have a great evening --- TURK <goturk1@...> wrote: > Hello and Darlene; > I was on different meds when i first got my ICD #1 > in 2001, after 49+ shocks finally 4 months later > they put me on amiodarone, Toprol, Lisinopril, > coumidine(i was on it from 1994), digoxin, lasik and > potassium tablets. Since may 2001(knock on wood) no > zaps. Amiodarone is a very dangerous miracle drug. i > feel lucky to be on it for 6 years. I think it is > the main reason why i did not even have a non > sustained ones since may 2001 except for one > episode. I just feel blessed that when i was at the > end of my rope from getting shocked so much and > about to give up and tell them take the machine out, > I met Jon Duffy, , Sharon, Guin and lots of > others that were here. They showed me how to take 1 > minute at a time and how blessed i was. Since then I > live in the Now (like the Dog Whisperer Sezar Milan > says). I feel much better and happier. Good luck. > TURK > > Darlene El Tohamy <darljl2002@...> wrote: > Hi - I am on 200 mg per day of > Amiodarone for about ten years because of Afib. > However, it was not keeping me in sinus so about one > year ago my " then " cardiologist took me off of it > and put me on just Coumadin. He said come back in > six months. Well, about five months later because > of a car accident I found out that I had vtach. > They put in a ICD and put me back on Amiodarone and > Toprol and all the other heart failure medicines. My > EF was 15. Now it is 35 and has been that way since > last summer. My " new " cardioloigst wants to keep me > on Amiodarone since now my heart is in sinus rhytmn > all of the time. My doc says he doesn't understand > why, but I will take it. I have liver, eye, and > lung checks because of all the possible side effects > of this drug. However, I have not had any problems > with it that I know of....Take care, Darlene > > Re: being positive > > Hello, > > I have been on Amiodarone for over 10 > years.....but a small dosage. It was a last resort > drug for me. The doctors had tried all the other > meds available. The doctors are now trying to lower > the dosage. They are increasing my Toprol so they > can lower the Amiodarone. I guess they are > concerned about me being on the drug for so > long....I am 42. The side effects that bother me > the most is sun sensitivity. It is impossible to > enjoy summer. > > I had two cardiac arrest before being implanted > with an ICD. I have found that after an cardiac > event, I go into " freak out mode " . As time passes > and I get further away from the event....my life > slowly returns to some normalcy. Two months ago I > received four shocks...my first....I had panic > attacks...had to go on Paxil....now I am off the > Paxil because I felt lifeless. I have to say that > the Paxil was a big help during the attacks! > > Hope this helps, > in Vermont > > hkauffman <hkauffman (DOT) com> wrote: > I know alot of you are out there just like me. > Have you had a cardiac > arrest. I would love to hear from anyone who can > tell me when the > freak out mode ends. > I had my ICD since january and it has gone off for > good reason V Tac > two times. I am also on amiodarone and just feel > lousy. Is there > anyone out the with experience on this drug. I know > it is usually a > last resort type of med but the side effects bite. > I really want to stay positive and wonder if any of > you out there have > some good tricks. > > thanks so much > > > > > > --------------------------------- > Ahhh...imagining that irresistible " new car " > smell? > Check out new cars at Autos. > > > > > > > > > > > --------------------------------- > Ahhh...imagining that irresistible " new car " smell? > Check outnew cars at Autos. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Dear , It was so great to read your email. It sounds like you are doing well. I also am fairly young 45 and they dont seem to want you on that drug very long. You have been on Amiodarone for 10 years. Have they spoke with you about mapping and burning out the faulty circuts? I am also wondering how often you get zapped this is weird I have had a jolt once a month since implanted....so I am a bit leary of this whole thing. Thankful to be alive...but a bit shellshocked. thanks for listening hilary --- Belanger <nekkelly@...> wrote: > Hello, > > I have been on Amiodarone for over 10 > years.....but a small dosage. It was a last resort > drug for me. The doctors had tried all the other > meds available. The doctors are now trying to lower > the dosage. They are increasing my Toprol so they > can lower the Amiodarone. I guess they are > concerned about me being on the drug for so > long....I am 42. The side effects that bother me > the most is sun sensitivity. It is impossible to > enjoy summer. > > I had two cardiac arrest before being implanted > with an ICD. I have found that after an cardiac > event, I go into " freak out mode " . As time passes > and I get further away from the event....my life > slowly returns to some normalcy. Two months ago I > received four shocks...my first....I had panic > attacks...had to go on Paxil....now I am off the > Paxil because I felt lifeless. I have to say that > the Paxil was a big help during the attacks! > > Hope this helps, > in Vermont > > hkauffman <hkauffman@...> wrote: > I know alot of you are out there just like > me. Have you had a cardiac > arrest. I would love to hear from anyone who can > tell me when the > freak out mode ends. > I had my ICD since january and it has gone off for > good reason V Tac > two times. I am also on amiodarone and just feel > lousy. Is there > anyone out the with experience on this drug. I know > it is usually a > last resort type of med but the side effects bite. > I really want to stay positive and wonder if any of > you out there have > some good tricks. > > thanks so much > > > > > > > --------------------------------- > Ahhh...imagining that irresistible " new car " smell? > Check outnew cars at Autos. ________________________________________________________________________________\ ____Pinpoint customers who are looking for what you sell. http://searchmarketing./ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Hello and , This is my first communication ever within this group. I've had my device for a few years, I'm 43 years old. I went 9 months before I got shocked the first time, but once it started firing, they put me on the amniodarone. I also take a low dose (200mg) and I was still getting shocked. During my device interrogations, I always request a copy of the event printout (the one that shows the arrhythmias). One day I had all of the printouts laying on the table and noticed that each event started in the same way. Apparently, my disarrhythmia was causing the pacing function in the single lead ICD to give me a pacing beat and it was immediately sending my heart into tachycardia or v-fib. So....long story short, I received a new device. It is a dual chamber pacemaker/ICD. They kept the same ventrical lead and added an atrial lead and put in the new device. I felt awful, and continued to get worse. The upside? I'm still not getting shocked. The device is pacing me out of it. It was still keeping me feeling very weak and then at cardiac rehab, I discovered that I felt awful when it was in a mode that paced me in the ventrical. Anyway, last week the electrophysiologist turned off the ventrical pacing, kept the defibrillator on and I'm only being pacing when needed in the atrium. I feel better than I have in months. If I continue this way, they may even take me off the amniodarone. I guess what I'm saying is, keep advocating for yourselves. I know that it can be hard to stay positive, but we just have to fight. If I hadn't caught the similarities in the events I was having on my own, I'd still have the old device and still be tolerating the shocks. Also, If I hadn't paid attention to my body and noticed how weak I felt when the vvi pacing started, I'd still feel cranky and weak. Thank goodness my doc was willing to listen to me both times. If you are looking for another great place to communicate with women who live with heart disease, try womenheart.com. I really love the people I get to share and compare with there also. Regards, > > I know alot of you are out there just like > > me. Have you had a cardiac > > arrest. I would love to hear from anyone who can > > tell me when the > > freak out mode ends. > > I had my ICD since january and it has gone off for > > good reason V Tac > > two times. I am also on amiodarone and just feel > > lousy. Is there > > anyone out the with experience on this drug. I know > > it is usually a > > last resort type of med but the side effects bite. > > I really want to stay positive and wonder if any of > > you out there have > > some good tricks. > > > > thanks so much > > > > > > > > > > > > > > --------------------------------- > > Ahhh...imagining that irresistible " new car " smell? > > Check outnew cars at Autos. > > > > > _____________________________________________________________________ _______________Pinpoint customers who are looking for what you sell. > http://searchmarketing./ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 I have talked to my doctor's about mapping etc....but I am not a candidate because they can't pinpoint where my VT is located. I wish it was an option. Currently the only options are meds. If things get worse....a transplant....which I would rather carry on with the one God gave me as long as possible. In the 10 years , I have only had the "zaps" that I explained earlier. I have been paced many times and it appears to be an effective therapy for me. The zap I did receive has changed my life. I used to think I was pretty tough...now I know I can be turned into a mass of fear in seconds. Hang in there and keep e-mailing this group and talking to your doctor's. in Vermont Kauffman <hkauffman@...> wrote: Dear ,It was so great to read your email. It sounds like youare doing well. I also am fairly young 45 and theydont seem to want you on that drug very long. You havebeen on Amiodarone for 10 years. Have they spoke withyou about mapping and burning out the faulty circuts?I am also wondering how often you get zapped this isweird I have had a jolt once a month sinceimplanted....so I am a bit leary of this whole thing.Thankful to be alive...but a bit shellshocked.thanks for listening hilary--- Belanger <nekkelly > wrote:> Hello,> > I have been on Amiodarone for over 10> years.....but a small dosage. It was a last resort> drug for me. The doctors had tried all the other> meds available. The doctors are now trying to lower> the dosage. They are increasing my Toprol so they> can lower the Amiodarone. I guess they are> concerned about me being on the drug for so> long....I am 42. The side effects that bother me> the most is sun sensitivity. It is impossible to> enjoy summer.> > I had two cardiac arrest before being implanted> with an ICD. I have found that after an cardiac> event, I go into "freak out mode". As time passes> and I get further away from the event....my life> slowly returns to some normalcy. Two months ago I> received four shocks...my first....I had panic> attacks...had to go on Paxil....now I am off the> Paxil because I felt lifeless. I have to say that> the Paxil was a big help during the attacks!> > Hope this helps,> in Vermont> > hkauffman <hkauffman > wrote:> I know alot of you are out there just like> me. Have you had a cardiac> arrest. I would love to hear from anyone who can> tell me when the> freak out mode ends.> I had my ICD since january and it has gone off for> good reason V Tac> two times. I am also on amiodarone and just feel> lousy. Is there> anyone out the with experience on this drug. I know> it is usually a> last resort type of med but the side effects bite.> I really want to stay positive and wonder if any of> you out there have> some good tricks.> > thanks so much > > > > > > > ---------------------------------> Ahhh...imagining that irresistible "new car" smell?> Check outnew cars at Autos.__________________________________________________________Pinpoint customers who are looking for what you sell. http://searchmarketing./ You snooze, you lose. Get messages ASAP with AutoCheck in the all-new Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 I remember doing a lot of searching of the Net for information about VT, ICDs and EP studies before my procedure and ICD implant. I was hopeful that they would find the source of the VT and oblate it. I remember the EP cardiologist telling me that the odds of locating the source of the VT were slim and if he could produce sustained VT during the EP study I was likely going to get an ICD. I think it was in the article about driving after a shock that it said that more and more ICDs are being put in as a preventative. Well here I am hoping that I don’t get shocked but knowing that if I do get shocked, it might have saved my life. At my last ICD check the technician put the sensor on my chest and started poking at her keyboard. I left her do that a few seconds and then suggested she put the sensor on the right side. My ICD replaced a pacemaker that was on the right and I get the impression that the left side is the norm. The other night while taking a walk I noticed a boat on a trailer sitting on a driveway. That didn’t seem strange until I noticed a man and a woman sitting in the seats facing forward and talking away. I had to wonder if that was all they could afford to do with the high price of gas? I also wished I had had my camera with me. Happy Holiday to all! Joe Schmidt God Loves Us All -----Original Message----- From: [mailto: ]On Behalf Of Belanger Sent: Saturday, May 26, 2007 10:09 AM Subject: Re: being positive I have talked to my doctor's about mapping etc....but I am not a candidate because they can't pinpoint where my VT is located. I wish it was an option. Currently the only options are meds. If things get worse....a transplant....which I would rather carry on with the one God gave me as long as possible. In the 10 years , I have only had the " zaps " that I explained earlier. I have been paced many times and it appears to be an effective therapy for me. The zap I did receive has changed my life. I used to think I was pretty tough...now I know I can be turned into a mass of fear in seconds. Hang in there and keep e-mailing this group and talking to your doctor's. in Vermont Kauffman <hkauffman@...> wrote: Dear , It was so great to read your email. It sounds like you are doing well. I also am fairly young 45 and they dont seem to want you on that drug very long. You have been on Amiodarone for 10 years. Have they spoke with you about mapping and burning out the faulty circuts? I am also wondering how often you get zapped this is weird I have had a jolt once a month since implanted....so I am a bit leary of this whole thing. Thankful to be alive...but a bit shellshocked. thanks for listening hilary --- Belanger <nekkelly > wrote: > Hello, > > I have been on Amiodarone for over 10 > years.....but a small dosage. It was a last resort > drug for me. The doctors had tried all the other > meds available. The doctors are now trying to lower > the dosage. They are increasing my Toprol so they > can lower the Amiodarone. I guess they are > concerned about me being on the drug for so > long....I am 42. The side effects that bother me > the most is sun sensitivity. It is impossible to > enjoy summer. > > I had two cardiac arrest before being implanted > with an ICD. I have found that after an cardiac > event, I go into " freak out mode " . As time passes > and I get further away from the event....my life > slowly returns to some normalcy. Two months ago I > received four shocks...my first....I had panic > attacks...had to go on Paxil....now I am off the > Paxil because I felt lifeless. I have to say that > the Paxil was a big help during the attacks! > > Hope this helps, > in Vermont > > hkauffman <hkauffman > wrote: > I know alot of you are out there just like > me. Have you had a cardiac > arrest. I would love to hear from anyone who can > tell me when the > freak out mode ends. > I had my ICD since january and it has gone off for > good reason V Tac > two times. I am also on amiodarone and just feel > lousy. Is there > anyone out the with experience on this drug. I know > it is usually a > last resort type of med but the side effects bite. > I really want to stay positive and wonder if any of > you out there have > some good tricks. > > thanks so much > > > > > > > --------------------------------- > Ahhh...imagining that irresistible " new car " smell? > Check outnew cars at Autos. __________________________________________________________Pinpoint customers who are looking for what you sell. http://searchmarketing./ You snooze, you lose. Get messages ASAP with AutoCheck in the all-new Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Hi there, Thanks so much for the chuckle about the folks in the boat. I need to laugh. I guess that I should just be thankful that I have this Icd and am getting zapped it sure is better than the alternative. I am wondering have you had your implant a long time ? I didnt even know they put these things in for preventative measures. Have fun out there --- ph Schmidt <glua.joe@...> wrote: > I remember doing a lot of searching of the Net for > information about VT, > ICDs and EP studies before my procedure and ICD > implant. I was hopeful that > they would find the source of the VT and oblate it. > I remember the EP > cardiologist telling me that the odds of locating > the source of the VT were > slim and if he could produce sustained VT during the > EP study I was likely > going to get an ICD. > > I think it was in the article about driving after a > shock that it said that > more and more ICDs are being put in as a > preventative. > > Well here I am hoping that I don’t get shocked but > knowing that if I do get > shocked, it might have saved my life. > > At my last ICD check the technician put the sensor > on my chest and started > poking at her keyboard. I left her do that a few > seconds and then suggested > she put the sensor on the right side. My ICD > replaced a pacemaker that was > on the right and I get the impression that the left > side is the norm. > > The other night while taking a walk I noticed a boat > on a trailer sitting on > a driveway. That didn’t seem strange until I > noticed a man and a woman > sitting in the seats facing forward and talking > away. I had to wonder if > that was all they could afford to do with the high > price of gas? I also > wished I had had my camera with me. > > Happy Holiday to all! > > Joe Schmidt > > God Loves Us All > > Re: being positive > > > > I have talked to my doctor's about mapping > etc....but I am not a candidate > because they can't pinpoint where my VT is located. > I wish it was an > option. Currently the only options are meds. If > things get worse....a > transplant....which I would rather carry on with the > one God gave me as long > as possible. > > In the 10 years , I have only had the " zaps " that I > explained earlier. I > have been paced many times and it appears to be an > effective therapy for me. > The zap I did receive has changed my life. I used > to think I was pretty > tough...now I know I can be turned into a mass of > fear in seconds. Hang in > there and keep e-mailing this group and talking to > your doctor's. > > in Vermont > > Kauffman <hkauffman@...> wrote: > Dear , > > It was so great to read your email. It sounds like > you > are doing well. I also am fairly young 45 and they > dont seem to want you on that drug very long. You > have > been on Amiodarone for 10 years. Have they spoke > with > you about mapping and burning out the faulty > circuts? > > I am also wondering how often you get zapped this is > weird I have had a jolt once a month since > implanted....so I am a bit leary of this whole > thing. > Thankful to be alive...but a bit shellshocked. > > thanks for listening > > hilary > > --- Belanger < nekkelly@... > <mailto:nekkelly%40> > > wrote: > > > Hello, > > > > I have been on Amiodarone for over 10 > > years.....but a small dosage. It was a last resort > > drug for me. The doctors had tried all the other > > meds available. The doctors are now trying to > lower > > the dosage. They are increasing my Toprol so they > > can lower the Amiodarone. I guess they are > > concerned about me being on the drug for so > > long....I am 42. The side effects that bother me > > the most is sun sensitivity. It is impossible to > > enjoy summer. > > > > I had two cardiac arrest before being implanted > > with an ICD. I have found that after an cardiac > > event, I go into " freak out mode " . As time passes > > and I get further away from the event....my life > > slowly returns to some normalcy. Two months ago I > > received four shocks...my first....I had panic > > attacks...had to go on Paxil....now I am off the > > Paxil because I felt lifeless. I have to say that > > the Paxil was a big help during the attacks! > > > > Hope this helps, > > in Vermont > > > > hkauffman < hkauffman@... > <mailto:hkauffman%40> > wrote: > > I know alot of you are out there just like > > me. Have you had a cardiac > > arrest. I would love to hear from anyone who can > > tell me when the > > freak out mode ends. > > I had my ICD since january and it has gone off for > > good reason V Tac > > two times. I am also on amiodarone and just feel > > lousy. Is there > > anyone out the with experience on this drug. I > know > > it is usually a > > last resort type of med but the side effects bite. > > I really want to stay positive and wonder if any > of > > you out there have > > some good tricks. > > > > thanks so much > > > > > > > > > > > > > > --------------------------------- > > Ahhh...imagining that irresistible " new car " > smell? > > Check outnew cars at Autos. > > __________________________________________________________Pinpoint > customers > who are looking for what you sell. > http://searchmarketing./ > <http://searchmarketing./> > > > _____ > > You snooze, you lose. Get messages ASAP with > AutoCheck > <http://us.rd./evt=47959/*http://advision.webevents./mailb > eta/newmail_html.html> > in the all-new Beta. > ________________________________________________________________________________\ ____Got a little couch potato? Check out fun summer activities for kids. http://search./search?fr=oni_on_mail & p=summer+activities+for+kids & cs=bz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Hi there, Thanks so much for your email. I am taking your advice and trying every day to get better with keeping track of what my body is doing. It is really easy for me just to say lousy because I dont really want to feel it. I am now keeping track of my blood pressure and writing down exact symtoms. Guin have you had your Icd a long time? Has it zapped you? This is all so new to me. I really enjoy talking to someone who has been thru this for awhile. thanks for talking to me --- Guin Van Dyke <guin@...> wrote: > Talk with your Doctor and let him know your > symptoms, see if there are alternatives to the > medications you are on. I found that my Doc listens > when I let him know my symptoms, instead of just > saying " I feel lousy " , I let him know, I am dizzy, > my blood pressure feels too low, I am very fatigued > etc. Just keep talking and keep trying to learn > your options.... > Hang in there. > ~guin > > being positive > > > I know alot of you are out there just like me. > Have you had a cardiac > arrest. I would love to hear from anyone who can > tell me when the > freak out mode ends. > I had my ICD since january and it has gone off for > good reason V Tac > two times. I am also on amiodarone and just feel > lousy. Is there > anyone out the with experience on this drug. I > know it is usually a > last resort type of med but the side effects bite. > I really want to stay positive and wonder if any > of you out there have > some good tricks. > > thanks so much > > > > ________________________________________________________________________________\ ____Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel and lay it on us. http://surveylink./gmrs/_panel_invite.asp?a=7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Thanks Darlene, I also am in heart failure but up from an 18 to 32 so I am pretty pumped about that. Has your ICD gone off or are the meds keeping you stable. It is so great to talk to other folks that are going thru what I am. take care --- Darlene El Tohamy <darljl2002@...> wrote: > Hi - I am on 200 mg per day of Amiodarone for about > ten years because of Afib. However, it was not > keeping me in sinus so about one year ago my " then " > cardiologist took me off of it and put me on just > Coumadin. He said come back in six months. Well, > about five months later because of a car accident I > found out that I had vtach. They put in a ICD and > put me back on Amiodarone and Toprol and all the > other heart failure medicines. My EF was 15. Now it > is 35 and has been that way since last summer. My > " new " cardioloigst wants to keep me on Amiodarone > since now my heart is in sinus rhytmn all of the > time. My doc says he doesn't understand why, but I > will take it. I have liver, eye, and lung checks > because of all the possible side effects of this > drug. However, I have not had any problems with it > that I know of....Take care, Darlene > > > Re: being positive > > Hello, > > I have been on Amiodarone for over 10 years.....but > a small dosage. It was a last resort drug for me. > The doctors had tried all the other meds available. > The doctors are now trying to lower the dosage. > They are increasing my Toprol so they can lower the > Amiodarone. I guess they are concerned about me > being on the drug for so long....I am 42. The side > effects that bother me the most is sun sensitivity. > It is impossible to enjoy summer. > > I had two cardiac arrest before being implanted with > an ICD. I have found that after an cardiac event, I > go into " freak out mode " . As time passes and I get > further away from the event....my life slowly > returns to some normalcy. Two months ago I received > four shocks...my first....I had panic attacks...had > to go on Paxil....now I am off the Paxil because I > felt lifeless. I have to say that the Paxil was a > big help during the attacks! > > Hope this helps, > in Vermont > > hkauffman <hkauffman (DOT) com> wrote: > I know alot of you are out there just like me. Have > you had a cardiac > arrest. I would love to hear from anyone who can > tell me when the > freak out mode ends. > I had my ICD since january and it has gone off for > good reason V Tac > two times. I am also on amiodarone and just feel > lousy. Is there > anyone out the with experience on this drug. I know > it is usually a > last resort type of med but the side effects bite. > I really want to stay positive and wonder if any of > you out there have > some good tricks. > > thanks so much > > > > > > > Ahhh...imagining that irresistible " new car " smell? > Check out new cars at Autos. > ________________________________________________________________________________\ ____Shape in your own image. Join our Network Research Panel today! http://surveylink./gmrs/_panel_invite.asp?a=7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 , I thought I would wade in here with Guin (hey Guin!) because I remember well what it was like to be new to this experience. My first shock was a year and a few months after implantation in March 2002. I had not been feeling well off and on for a day or two but I could not pinpoint the cause. But, I was dizzy and woozy, even just getting out of bed, so don't ignore that little warning. It may not be the same for you, but then again, you never know. My first shock was in the shower and second, over a year later right after I got up in the morning. Both times I had just not felt right. I pay special attention to any dizziness. All the best! Becca in Florida (homesick for Carolina) Kauffman <hkauffman@...> wrote: Hi there,Thanks so much for your email. I am taking your adviceand trying every day to get better with keeping trackof what my body is doing. It is really easy for mejust to say lousy because I dont really want to feelit. I am now keeping track of my blood pressure andwriting down exact symtoms.Guin have you had your Icd a long time? Has it zappedyou? This is all so new to me. I really enjoy talkingto someone who has been thru this for awhile. thanksfor talking to me --- Guin Van Dyke <guinvandyke-ranch> wrote:> Talk with your Doctor and let him know your> symptoms, see if there are alternatives to the> medications you are on. I found that my Doc listens> when I let him know my symptoms, instead of just> saying "I feel lousy", I let him know, I am dizzy,> my blood pressure feels too low, I am very fatigued> etc. Just keep talking and keep trying to learn> your options....> Hang in there.> ~guin> > being positive> > > I know alot of you are out there just like me.> Have you had a cardiac> arrest. I would love to hear from anyone who can> tell me when the> freak out mode ends.> I had my ICD since january and it has gone off for> good reason V Tac> two times. I am also on amiodarone and just feel> lousy. Is there> anyone out the with experience on this drug. I> know it is usually a> last resort type of med but the side effects bite.> I really want to stay positive and wonder if any> of you out there have> some good tricks.> > thanks so much > > > > __________________________________________________________Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel and lay it on us. http://surveylink./gmrs/_panel_invite.asp?a=7 Looking for a deal? Find great prices on flights and hotels with FareChase. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2007 Report Share Posted June 1, 2007 Being shocked 49 times i know how it feels and how it sounds. In my case i hear a strong thump in my chest and it hurts. But i still say as long as it is keeping me alive go ahead and shock me. i feel lucky to have this thing which i call my doctor in my chest. Love TURK Baker <laurarn@...> wrote: I had the same problem with being paced throwing my into VT. My pacer rate was set at 40 then increased to 50 because I as going to start on sotolol. Once I was admitted and they saw a lot my VT started the same way, they lowered the pacer rate to 30 and it didn't happen anymore. It wasn't the cause of all my VT but it was some of it. From: [mailto: ] On Behalf Of s_purvineSent: Friday, May 25, 2007 11:46 PM Subject: Re: being positive Hello and ,This is my first communication ever within this group.I've had my device for a few years, I'm 43 years old. I went 9 months before I got shocked the first time, but once it started firing, they put me on the amniodarone. I also take a low dose (200mg) and I was still getting shocked. During my device interrogations, I always request a copy of the event printout (the one that shows the arrhythmias). One day I had all of the printouts laying on the table and noticed that each event started in the same way. Apparently, my disarrhythmia was causing the pacing function in the single lead ICD to give me a pacing beat and it was immediately sending my heart into tachycardia or v-fib. So....long story short, I received a new device. It is a dual chamber pacemaker/ICD. They kept the same ventrical lead and added an atrial lead and put in the new device.I felt awful, and continued to get worse. The upside? I'm still not getting shocked. The device is pacing me out of it. It was still keeping me feeling very weak and then at cardiac rehab, I discovered that I felt awful when it was in a mode that paced me in the ventrical. Anyway, last week the electrophysiologist turned off the ventrical pacing, kept the defibrillator on and I'm only being pacing when needed in the atrium. I feel better than I have in months. If I continue this way, they may even take me off the amniodarone.I guess what I'm saying is, keep advocating for yourselves. I know that it can be hard to stay positive, but we just have to fight. If I hadn't caught the similarities in the events I was having on my own, I'd still have the old device and still be tolerating the shocks. Also, If I hadn't paid attention to my body and noticed how weak I felt when the vvi pacing started, I'd still feel cranky and weak. Thank goodness my doc was willing to listen to me both times.If you are looking for another great place to communicate with women who live with heart disease, try womenheart.com. I really love the people I get to share and compare with there also.Regards,> > I know alot of you are out there just like> > me. Have you had a cardiac> > arrest. I would love to hear from anyone who can> > tell me when the> > freak out mode ends.> > I had my ICD since january and it has gone off for> > good reason V Tac> > two times. I am also on amiodarone and just feel> > lousy. Is there> > anyone out the with experience on this drug. I know> > it is usually a> > last resort type of med but the side effects bite.> > I really want to stay positive and wonder if any of> > you out there have> > some good tricks.> > > > thanks so much > > > > > > > > > > > > > > ---------------------------------> > Ahhh...imagining that irresistible "new car" smell?> > Check outnew cars at Autos.> > > > > _________________________________________________________________________Pinpoint customers who are looking for what you sell. > http://searchmarketing./>__________ NOD32 2295 (20070529) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com Luggage? GPS? Comic books? Check out fitting gifts for grads at Search. Quote Link to comment Share on other sites More sharing options...
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