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  • A-Fib with HCM - Looking for help/advice/experienc...

    [A-Fib with HCM - Looking for help/advice/experiences]

    Author: Jake D. (---.dsl6660157.rstatic.surewest.net)

    Date: 04-18-02 17:21

    Greetings,

    My story is a long and complicated one. I'm male, age 48, and I was disagnosed with IHSS (HCM) at age 25 and put onto Inderal then. I have been on it ever since. Perhaps 8 or 9 years ago my cardilogist at the time also put me on Norpace (disopyramide) in addition to the Inderal, and I have been taking both ever since.

    For at least the past 15 or more years, I would get these "attacks" every now and then where I felt like I was going to die. My heart would pound, my breathing would be very labored, and I would feel perfectly awful. I believed that this was due to my IHSS. I believed that for many many years, and I only found out relatively recently that that was entirely incorrect, and that I had something else wrong with me, namely atrial fibrillation on top of the IHSS.

    Probably the main reason that neither I nor any of the many cardiologists that I have had over the years ever knew that I had A-fib was that I was VERY reluctant to complain to the cardiologists about my "attacks", because I was afraid that if I talked or complained too much about these that the cardiologists would just tell me "Ok, you now have to go and have a myectomy procedure done." (Oh! Swell! So NOW you want to rip my chest open and start slicing and dicing, eh? GET AWAY FROM ME WITH THAT KNIFE SCHMUCK!)

    You get the idea.

    I knew that myectomy was a rather horrible prospect with a definitely non-zero risk of death on the operating table, so I never complained much about my "attacks". (This turns out to have been a HUGE mistake on my part, but I'm certainly not the only one to blame. See below.)

    Anyway, about 2 years ago now, I went down to Houston and had the alcohol ablation procedure for my IHSS. It was done by Dr. Spencer. It was quite successful, I think, and I did feel rather better afterwards. I could bound up stairs, instead of slowly wheezing my way up them. So that was good. But I would still get these periodic "attacks" and I didn't know why. I just learned that despite what Dr. Spencer had told me, I could NOT just stop taking all of my meds, Inderal and Norpace. I _did_ still have to take both of those in order to prevent the A-fib "attacks". (Spencer apparently didn't know, and didn't figure out that I had a side order of A-Fib along with my IHSS entre'.)

    Well, one Saturday about a year and a half ago, after I had had the alcohol ablation, I got an attack that was real bad so I went to the local Emergency Room and _there_ I was finally diagnosed with A-Fib (in progress at that time). It stopped after I was there for awhile, so even though the ER staff wanted to admit me to the hospital, I decided to check myself out and go back home. The following week I got a regular office appointment with the advising cardiologist that had helped the ER doc to diagnose me with A-Fib, and I have been seeing him ever since.

    Anyway, my IHSS was essentially/mostly fixed by the alcohol ablation, but I still am stuck with this *&^%$#@ damn A-Fib! And now it is driving me nuts! It comes and goes. Sometimes, I can go for months and have no A-Fib episodes, but other times, like lately, there may be a week or more where I have maybe one episode a day, or more. (I had two yesterday.)

    I am looking for other people with IHSS/HCM and also A-Fib who can at least sympathize with my plight and maybe give me some good advice about what I should do next. This is REALLY ruining my life. I'm essentially disabled (as in "can't work") if I can't get control of this A-Fib, but I'm too young to be put out to pasture just yet! (I'm an out-of-work software engineering contractor at the moment.)

    I hope I'm not the only one who understands just how perfectly AWFUL an A-Fib episode feels when you also have IHSS/HCM too. Apparently, for people without HCM, A-fib is just an annoyance, but for people like me with IHSS/HCM, an A-Fib episode WILL be quite uncomfortable because the ventricle walls are so stiff, and they don't react well to having to deal with the atria not pumping properly. (Any ex-hippies out there who remember the Country Joe & The Fish song "Feel Like I'm Fixin' To Die Rag"?)

    The only good news is that _usually_ I can just pop an extra 150mg capsule of immediate release Norpace (disopyramide) and wait an hour and a half or so and then that kicks my atria back into normal rythm. But that's not good enough when you are having these damn attacks once a day! I'm miserable, and I'm looking for a way out. I'm _not_ keen on _either_ open heart surgery (e.g. Maze procedure) _or_ implantation of pacemaker or AV node ablation (with also forces you to have a pacemaker afterwards) and it isn't even clear to me that with the specific kind of A-Fib I have (which probably derives from the underlying IHSS) that any of those things would even work or be appropriate anyway. But I feel like I've got to do something because this A-Fib stuff is really ruining my life now. The episodes are just becoming too frequent.

    Any help or advice or even just sympathy from other people who have both HCM/IHSS and A-Fib on top of that would be appreciated. Please post your replies to the board. Thanks.

    P.S. For whatever it is worth, I also want to say that I am pretty damn PISSED OFF at _all_ of the dozen or so cardiologists (even including Dr. Spencer) who have seen me over the years. Why didn't any of them ever ask me the Right Questions? Why didn't any of them ever see, understand, learn, or tell me that I _also_ had a-fib on top of my IHSS??

    Apparently none of these boneheads can diagnose a-Fib unless it is right there in front of them, staring them in the face on a real-time EKG readout for a live patient who is actually *in* A-Fib while they happen to be in the doctor's office. Jeesshhh! I mean come on! These guys _know_ that the development of A-Fib is a common artifact/side-effect of IHSS/HCM, so why don't any of these goofballs ask the right questions or run the tests necessary to at least find out an IHSS/HCM patient also has periodic A-fib?

    I suffered from A-Fib attacks for over 15 years, and NONE of the dozen or more cardiologists I saw during that time ever gave me even the smallest hint that I might have A-Fib on top of the IHSS. So for more than 15 years, I was kept in the dark about the _real_ source of most of my discomfort. As I angry? You bet your *** I am! And how!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Dora J. (---.proxy.aol.com)

    Date: 04-18-02 18:54

    I feel for you even though I don't have the same problem. I do have HCM. I would however like for you to contact a guy that has had a lot of the same problem that you do however his started when he was 8. This guy called me last night and talked to me about my condition and gave me a lot of hope. I met him on one of the other post boards.

    His e-mail address is: [email protected]

    I hope this will help you.

    Dora J.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-18-02 19:27

    Dear Jake

    Let's deal with safety first:

    1. Are you on Coumadin? If not, why not? Atrial fib creates an 8x increase in your stroke risk and since you go in and out, you should be on Coumadin to prevent a stroke. Aspirin is not enough.

    2. Norpace and Inderal are NOT the only drugs out there. Other anti-arhythmia medications to consider are amiodarone and dofetilide (Cordarone and Tikosyn). They have very good success rates for controlling a.fib. Surgery is a last resort.

    3. CHANGE DOCTORS. Call the HCMA at 973-983-7429 to get the name of an HCM specialist near you.

    4. I'm concerned about taking that extra Norpace --is that doctor approved? Because Norpace can cause fatal arrhythmias (if you read the prescribing info, sudden death is a "side effect") so I'm wondering about the sudden spike of Norpace in your system. However, if it hasn't bothered you yet, it probably won't.

    My story:

    I'm 33 and I have HCM and I have atrial fibrillation, too. My brother, with HCM, is permanently in a.fib. as is my aunt.

    I was on Norpace and Corgard for ten years, no problem. In March 2000, I went into a.fib. and they cardioverted me 26 hours after the onset and told me that I couldn't have a stroke b/c I hadn't been in a.fib. long enough to grow a clot. They were wrong and I had a TIA the next morning. Norpace failed to keep me in sinus, so now I'm on dofetilide and it keeps me in sinus rhythm (normal) most of the time. I flip in and out of sinus and I take coumadin daily to prevent another TIA.

    Feel free to e-mail me if you want to chat. A.fib. is horrible. I get wiped out, I can't move sometimes, I'm so tired from it. However, once you are in it for a long time, you adjust somewhat and are less tired, but you can't do as much either.

    take care and keep in touch,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Jake D. (---.dsl6660157.rstatic.surewest.net)

    Date: 04-18-02 23:28

    First, my thanks to Dora for the sympathy. That _was_ at least some of what I was hoping to get there... that and maybe some bits of good advice and/or sage wisdom.

    Now to, Sarah, thanks for all of the info you provided. I feel like now, maybe at last, I'm on the road to getting some REAL help for the REAL thing that's been making me miserable all these years. I'm going to be asking my doc some pointed questions about those other medications you mentioned, and more importantly, I will probably also call the number you gave a get myself a _real_ HCM specialist for a change. (The guy I'm seeing now is just a cardio generalist, I think.)

    To answer your questions:

    Yes, my current cardiologist tried to get me onto coumadin, yes I understand why (and the risks) and no, I am _not_ actually taking it now, because I elected to go against his advice in this case. Why? Simple. All the stuff I've seen says that clots IN MOST CASES will only happen after a continuous 48 hours in A-Fib. OK, so your case is an eye opener, because it happened to you after only 26, but still, I've _never_ gotten anywhere near that... maybe 3 1/2 hours of A-Fib, tops, for me... and if I ever did go that long in continuous A-Fib I think that a stroke would be the least of my worries. It is _soooooo_ unpleasant when I have an A-Fib episode that if I ever went for more than 12 hours in that state, I think I'd just put a bullet in my own brain, just to stop the torment. I'm not kidding. For me, A-Fib is absolute torment... not every hour of it... every SECOND of it. I sit on the couch, wheezing for breath, clutching my chest, and watching the clock as I wait for the extra Norpace to kick in. When I'm in this state, I _definitely_ can't sleep, and I can barely do anything else. (And yes, like you said, it is VERY tiring. I usually feel like I just ran a marathon afterwards.) Anyway, I'm like totally perplexed when I hear about people (like your brother) who are in a-Fib continuously. God! If that happened to me, I'd die of sleep depravation after about 4 days! There's no way I can sleep when I feel like that, and the pounding in my chest alone would keep me awake.

    So I don't take Coumadin because I hope to God that I'm never in A-fib for more than a few hours straight... not enough time for a clot to form.

    On your other question, yea, the extra Norpace is OK with both my previous cardilogist and my current one. (My old one just said "If you feel bad, take more.") Heck! Why should they object? I've been on the stuff for years, so obviously I tolerate it well, and after all, it _is_ one of the things they'd probably inject you with in the hospital if they wanted to try to get you out of A-fib without having to cardiovert you. So the only real difference between THEM giving me more and ME giving me more is that when I do it, I don't get stuck with a big bill for services rendered from the local ER. As long as I don't push the envelope (in terms of maximal per-day dosage) it doesn't seem to be a problem.

    Now, a questions for you... What is Corgard? You mentioned it, but you didn't say what it was. I never heard of that one before.

    Another question: How can your brother stand to be in this state continuously? I'm not kidding when I say that for me, that would be utterly unberable.

    Anyway, I'll e-mail you, because yes, I'd like to talk. At the very least, we can comiserate.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-18-02 23:56

    Dear Jake,

    I know exactly how you feel about doctors. If taking an extra Norpace keeps you out of the ER, more power to you.

    Corgard is nadolol, a beta-blocker. Inderal is one of the oldest, if the not the oldest, beta-blocker. They reduce bloodpressure, heart rate, and palpitations and are the drug of choice for HCM. Gee, do I sound like an advertisement yet? ; )

    Anyway, your bouts of a.fib. don't sound anything like mine or my brothers, or anyone in my family. Have you had a Holter monitor (24 hour ecg) to see if there are any other arrhythmias in those episodes? It just sound so extreme. I'm sorry they are so intense, but thankfully they are relatively short.

    The first time I went into afib, all I wanted to do was lay down. I felt my heart jumping, but I was almost too tired to care. I knew that I wouldn't make it up and down a flight of stairs. My husband (now ex) wanted me to walk to the grocery store and was so pissed off that I refused to go, knowing that I wouldn't make a block. He never did understand --part of why we are now divorced.

    I will be in afib for up to two weeks at a time, which I hate, and I always worry that I won't go back into sinus again, but so far I always have. Usually it is only a few days or a few hours. Depends on my stress level, actually.

    Have you charted when your episodes of afib happen? You may find a trigger like ice cold beverages, caffiene, alcholol, heavy meals, being too hot, not enough sleep, too much exercise, etc. Yes, these are all triggers for some people.

    Also, your magnesium and potassium may be low as those are hard items to get enough of. Even though I'm only 33, I take the One-a-Day formula for seniors b/c it has the combination I want.

    Feel free to e-mail me.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: lisa (---.dyn.optonline.net)

    Date: 04-19-02 08:31

    Jake,

    Well it seems that you have had a bit of a hard time (to put it lightly!).

    1. Your NOT alone!

    2. I am sorry for the misinformation you have received in the past and HOPE that we are able to get you to a DR that is not a "bonehead"

    3. I would love to talk to you futher to get to the bottom of some of this mess.

    4. To anyone reading this.... I have said this 1000 times before Alcohol Ablation IS NOT a CURE ...HCM has many faces, you can NOT only treat ONE...or frankly the others will turn an bit you in the ___. ( you fill in the blank)

    Jake... CALL ME! 973-983-7429

    Best wishes TO ALL!

    Lisa Salberg

    President

    HCMA

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Glen (---.com)

    Date: 04-19-02 08:39

    Hi Jake, Have you ever worn a Holter Monitor for 24-48 hrs? They would certainly see that on the monitor for as many times as you go in and out of a-fib.

    I'm 52 and was diagnosed at 22 and my a-fib sounds similar to yours in that I would get episodes that lasted several hours rather than several days, but I never had breathing & chest pain problems, just the uncomfortable arrhythmia.

    I was originally put on Inderal as you were and also Bi-Quin for my arrhythmia and was just recently switched to Atenolol and Amiodarone because they don't usually give Inderal & Bi-Quin anymore because as my cardiologist who has been an HCM specialist for about 40 years says there are newer and better drugs now and he swears by Atenolol & Amiodarone. However drugs do not work the same in all people and it may mean finding the right combo for yourself.(see my posting re med change)

    If you've never worn a Holter Monitor I would think this should be done to make sure there is nothing else happening aside from your a-fib and maybe a change in your med combination is required.

    Also don't hold back from the doctors, they can't treat what they don't know and if you had complained of this before they may have taken a different treatment route.

    Good luck and stay well

    Glen

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Cindy Hughes (---.monroe-guaranty.com)

    Date: 04-19-02 14:42

    Jake, I have HOCM with A-Fib, too. I am currently waiting to see Dr. Spencer in Houston (in May) with hopes of being an alcohol ablation candidate.

    The A-fib began 4 years ago for me. ( I am 47 and was diagnosed at 13). Quite suddenly. Last year, I went through a period in and out 7 or 8 times inside of a week. Prior to that it had been a couple of times a month. I had previously taken Norpace but was switched to amiodarone last June. I didn't want to take the drug because it is one of the "big guns" and only recently has been used for atrial fibrillation. I the past 10 months, I have been in A-fib zero times. Like it or not, the drug works for me and a lot of other people.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Steve (---.proxy.aol.com)

    Date: 04-19-02 22:23

    Jake, I am a 43 and also have HCM and A-fib. My A-fib attacks where like you described. I was in the ER time and time again and would have a hard time being converted back. I ended up on so many meds that I was dizzy all the time and still going in and out of fib, mine would last from hours to days. The most being eleven of those terrible days you spoke of. After about a year of this, when I started to believe that I wouldn't die from the A-fib, I would just stay at home and strap on the oxygen and take a tranquilizer. The oxygen helped the breathing and the tranquilizer would help alot, and allow me to sleep some too. I know exactly how bad this can feel. But the good news is that there is help out there if your willing to accept it. It's sounds like you've been offered some solutions but for whatever reason, are not willing take advantage of modern medicine. In the fall of 2000, with all my options spelled out for me, I went with a pacemaker and AV noid ablation. And you know what, like my doc had told me, he said sucess differs from all the people he has done this to, but all had improved. Well that's what it did for me, it improved my quality of life, enough that I am glad I did it. I was in that A-fib like you discribed too often and had to do something. Modern medicine beats a gun to the head every time in my book!! And I talked to a pacemaker Rep. last month (St. Judes) that says now they have a pacemaker out for A-fib that allows you not to have the AV noid ablation done (came out in 2001) I would have liked that option, but I have to tell you I'm so glad I had mine done, I was at a point with my fib that I was ready for anything, slice me, dice me just improve my life. And they did! I would suggest that you get with a Cardiac Electrophysiologist and revisit your optoins and the quality of life your living now and want for the future.

    I want you to know that my life is better than it was, and I work very hard at trying to stay positive (very hard at times, but I can put up a good front). I have been, as you say, "put out to pasture", I can't work or hardly do much of anything that I used to enjoy. I have some good days and just had to re-adjust my thinking and be thankful for what I can do. I found it helps to think of all the little things I can do ie, talk, see, feel,walk (short distances), love and be loved. My biggest inspiration is Christopher Reeves. When I start to have a pity party for myself, all I have to do is think of him and many others and that brings me back to reality. As long as I've got a pulse, there's a purpose for me to be here and am glad to have the opportunity to live it.

    For what it's worth, that's my two cents and I wish you all the hope and health of the world. God bless, Steve

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-20-02 01:48

    Dear Steve,

    I do the same thing. When I'm really scared and afraid and fed up, I just remind myself that I'm way better off than a lot of people. I moderate another message board and some of the women there are ill and have kids, family problems, no insurance, and many other obstacles that I don't, thankfully.

    In the grand scheme of things, I'm doing pretty well.

    Thanks for reminding me.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Jake D. (---.dsl6660157.rstatic.surewest.net)

    Date: 04-20-02 06:36

    First let me say thanks to everybody for your support. The moral support really does help, and it helps a lot to know that I'm not alone with regards to my situation/condition. Not that I would wish my set of conditions on anybody else mind you, but it is somehow vaguely comforting just to know that at least a few other people in the Universe know how I feel.

    To Lisa, thanks A LOT for running this board, and the association, and for all of your hard work.

    To Glen, yes, I did a 24-hour Holter, but that was a long long time ago... probably before I was doing the A-Fib thing. Anyway, all I know is that my cardiologist at the time... a guy named Koch, down near Stanford... never said a word to me about A-Fib. But then again, he hardly said anything, ever, which is THE reason I finally left him and found another cardiologist. (I swear, some of these guys get so taken with themselves and their medical prowess that they seem to forget they are dealing with live humans who have things like questions and concerns and such.)

    To Cindy, good luck on getting accepted for alcohol ablation. And if you get accepted, go for it. Even though I'm here bitching and moaning about my A-Fib and about cardiologists, I'm still glad I did the septal alcohol ablation with Spencer. Clearly, it didn't do a damn thing to fix my A-Fib, but when I'm not in A-Fib (which, thank God, is still most of the time) I do feel better and peppier than I did before the ablation. Just know that the septal ablation isn't going to do squat for your A-Fib, and don't let Spencer do to you what he did to me... telling me I could stop taking all of my meds after the ablation. (That may work just fine for somebody who only had the IHSS, but it was a disaster for me, and probably will also be for anybody with A-fib on top of the IHSS.) Oh yea, and one other thing... the procedure is pretty much of a breeze. It was for me anyway. I thought they were gonna keep me in the hospital for a full 24 hours at least, but after about 20 hours they sent an orderly around to kick me out cuz they needed the room. No, I'm not kidding (except about the needing the room part). If it hadn't been for my damn A-Fib acting up, the whole thing would have been easier than having my tonsils out.

    To Steve, yes, you're right. Gotta look on the bright side. I still got plenty to be thankful for, especially like not being Christopher Reeves. And don't get the wrong idea about me talking about putting a gun to my head. I don't view that as an alternative to having a pacemaker put in. I was just trying to make a point about how bad I feel when I'm in A-Fib and how _sleeping_ in that state is absolutely impossible for me. Seriously, if I ever found myself in A-fib for more than 24 hours at one time, I would be reduced to tears. At that point I'm quite sure that I would march into the nearest ER and tell them to either give me a pacemaker or shoot me. I can barely stand the A-Fib for 1 3/4 hours (which is what it typically takes for the extra Norpace to kick in... I had another episode this morning and another one tonite) and I know I'd just go nuts if I had to endure it ever for 24 hours or more.

    I'm trying to get an appointment now with a real electrophysiologist who maybe can tell why why the **** I've started to have these episodes so often all of a sudden. (They used to be very infrequent.) I keep wondering if it's something in my diet... too much sugar perhaps? I sure would like it if it came out as being something that simple. But if the bottom line turns out to be just that my time has finally come, and that the only way forward is to get a little metal box stuck in my chest, well then that's that. I'll get it done and not look back. Life doesn't always work out just the way we'd like it to, but it can still be pretty damn good. (I'm tempted to wax eloquent about the beauty of Venus hanging low in the sky on a cool spring evening at twilight.)

    Right now, I just wish that I knew on helluva lot more than I do know about both my conditions, but especially the A-Fib. Is it possible that there's a diet out there that could keep in in-sync without any further procedures? OK, OK, maybe I'm grasping at straws, and I'm sure that if I looked hard enough I could probably find a charleton or two who would be happy to sell me the A-Fib equivalent of apricot pits. But maybe there's also something out there (in the way of a diet) that would really work. Anybody know about any such? I already know for sure that my A-Fib triggers on alcohol, caffeine, and sometimes cold drinks and laying on my left side, but I think that maybe I've noticed a sugar connection too.

    The thing that's really annoying is that I have so little understanding about what _my_ A-Fib is really all about. I mean there is a lot of stuff online about _other people's_ kinds of A-Fib... generally what they call ``lone A-fib'', i.e. A-Fib with nothing else strange going on... but none of that applies to me, as I've learned, the hard way. For awhile I was convinced that I had the ``vagally mediated'' kind of A-Fib, and I tried cutting back on my Inderal because of that, but that just seemed to make matters worse, not better. Now I realize that the kind of A-Fib that _I_ have has aspects of _both_ what they call adregenic (sp?) or adrenalin-driven A-Fib and also aspects of the ``vagally mediated'' kind. Talk about confusing! And just go and try to find anything online that talks about A-Fib with IHSS/HCM. I've yet to find any useful information at all that would help me to understand this particular combination, other than a few scraps of information saying that A-Fib can result from an enlarged atrium, which I almost certainly _do_ have because of my years with IHSS.

    Just call me an analytical personality type. I want to understand. And over the years, I've become less and less comfortable with just doing this, that, or the other thing just because some guy with a white coat with his name stiched into it tells me to.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Steve (---.proxy.aol.com)

    Date: 04-20-02 10:12

    Jake, here is a web site about A-Fib that is good http://members.aol.com/mazern/ As usual it's hard to get info on both conditions and this site deals alot with the Maze procedure. I know that before my pacemaker I was ready for the Maze procedure, but when I contacted Dr. Cox's office (the doc that pioneered tha Maze procedure) they told me that having HCM also made me uneligable for the procedure. It's all a very tricky adventure trying to get the answers that a person wants. I feel a big key to it all is having a doctor that you can trust, with your life literally! Hang in there Bud, and always remember, an A-fib pulse beast no pulse every time!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-20-02 10:40

    Dear Jake

    There is a whole thread on this board about people who are eating low-carb diets and feeling better on them.

    I've found that food is really key to how I feel. If I don't get enough magnesium and potassium, forget it! If I'm eating cheese, it is like poisoning myself. Sometimes I do it anyway (when I'm PMSing, cheese is like heroin), but I know what I'm in for.

    Many people find that caffiene, alcholol, heavy meals and ice cold things all trigger palpitations or arrhythmias.

    So I try to eat really well and I take suppliments, too.

    take care,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Dora Jackson (---.proxy.aol.com)

    Date: 04-20-02 12:59

    Hi Jake,

    I am not sure what a A-Fib is, but with my HCM I find if I drink anything with artificial sweetner in it or one preservative call Sorbic in it my heart flip flops and I can not hardly even walk from my livingroom to my bedroom with out my heart feeling like it was going to jump out of my chest.

    Sorry that is all I have.

    Dora J.

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    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-21-02 16:24

    Dear Dora,

    Atrial fibrillation is a heart arrhythmia where the top half of the heart beats in a random pattern.

    Sarah

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    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Glen (---.com)

    Date: 04-22-02 08:55

    Jake, in one of your replys your ask why you are getting A-fib now more than say earlier in your HCM life.

    Last week I had a visit to my cardiologist, who has been an HCM specialist for close to 40 years and is considered one of the pioneers (in Canada) we talked about that very thing.

    Now this is how I understand it, he explained that because of the thickened Septum muscle, the left ventricle chamber, especially the top portion must pump harder than the rest of the heart to get the blood thru and like any muscle that works harder it gets bigger, aside from the HCM, and is out of proportioin with the other parts of your heart. When it gets to a certain size, mine was 52 - 56mm I believe, my HCM in the septum is 22mm, you are more prone to the odd ball signals that cause the A-fib.

    He tells me that because of my age, 52, the muscles in the left ventricle are getting to the point where I may be more prone to a-fib or even go into a-fib permanent.

    That was one of the reasons he put me on Amiodarone as opposed to Bi-Quin that I was taking previously. Amiodarone is just much more powerful for arrhythmia.

    You are 48 and have had your HCM for quite some time now.

    Could be the more frequent bouts of a-fib are caused from what I describe above.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Jake D. (---.monkeys.com)

    Date: 04-22-02 14:56

    Hello again gang! Just a quick report to say that I've just gone for about 27 hours straight with no A-Fib. Considering that I had definitely been working my way toward a constant 2 episodes per day over about the past 2 weeks, I consider this a real accomplishment! I just hope it lasts. We'll just have to wait and see.

    Ok, so now y'all will want to know what's changed.

    Well, it didn't make any sense to me the way my heart would just sort-of start to "act up" for no apparently clear reason every now and then, or why it had been acting up really a lot lately. Nothing about my daily activities had changed in any major way, so naturally I had to seriously consider that my (often lousy) eating habits might be at least partly to blame. (I often fail to eat anough fruits & vegatables.)

    I tried cutting out most of the starches (I normally like to eat a lot of pasta) and also most of the sugar, but perhaps more importantly, I started taking my daily multivitamins again, *and* perhaps even more importantly, after reading more online about how low magnesium and/or low potassium could trigger a-fib (and given that I had just bought a small bunch of bananas on my last trip to the market anyway) I thought "What the ****!" and I ate *three* medium sized bananas two days ago, and yesterday I ate another huge banana and one rather large orange. (Both bananas and oranges are said to be high in potassium, and oranges are said to be high in magnesium.) I also have gone back to taking magnesium dietary supplement pills.

    Anyway, I don't know if any or all of these changes explain why I've been a-fib free for the past 27 hours and counting. (I feel great at the moment.) But I can hope, can't I? I'm going to keep eating the bananas and oranges and see what happens. What the ****! It can't hurt. And as regards to bananas, I mean hay! What's not to like? (I love eating the darn things anyway, and the oranges aren't at all bad either. Very tasty.)

    I'm really starting to believe that maybe I can chalk up most or all of my recent (and even past) a-fib episodes mostly to lousy eating habits. Oh yea, I know that there's more to it than that. Like Glen said, the underlying IHSS has, over the years, caused my left atrium to become enlarged/stretched and that's almost certainly *the* major contributing cause of my a-fib. But at the moment the evidence also suggests that my own lousy eating habits are at least partly to blame too.

    (I feel like when I was first diagnosed with the a-fib, somebody should have shoved a book into my hand titled "Operating Manual for the A-Fib Prone Heart".)

    Anyway, just so nobody gets the Wrong Idea here, I _am_ still going to get an appointment with a real electrophysiologist, and I _will_ go see him and get his take on all this. But at the moment I'm feling damn good. I just hope it lasts.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Dora Jackson (---.proxy.aol.com)

    Date: 04-22-02 19:46

    I am so glad you are feeling better! The eating habit improvement probably made a big difference. Even though I don't like to admit to it I know when I eat good I feel much better. Keep up the good work.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-22-02 21:40

    Dear Dora and Jake

    Soooooo true. I'm the same.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Steve (---.proxy.aol.com)

    Date: 04-23-02 00:11

    Jake, I know with me both the magnesium and potassium make a big differance. Every time would end up in the ER with episodes of A-Fib with 250-300 BPM pulse the blood work would show low potassium. My EP doc put me on 40 MEQ of potassium daily and we monitor it regularly. For years I had blood work down annually for my job and it never was low unti,l for no reason, in 1999 it changed. EP doc said just eating high potassium food would not give me the amount I needed. So my point is, a simple blood test will tell you for sure if you need RX for potassium.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Nick T (---.ccisp.net)

    Date: 04-25-02 21:41

    Jake,

    My first attempt at a response to anyone and reading the message board. And I thought it was only me with HCM.

    I to was diognosed with IHSS by Navy and put on inactive duty. Angiogram 1973 then inderal and so on to the latest Cordarone and Tiazac. I have both ACID and pacemaker.

    I just got off of all medicines as they were killing me slowly. My brother 1.5 years older is trying Tikosyn. It is giving him a normal siinus rhythm he says. What is next I do not know.

    AF and Aflutter seem to be bad for certain people. Ours is inherited from mother who died in UK when I was 10 months old.

    Mayo Clinic does a lot of work on this stuff. Perhaps an Avenue. I am off medicine but still have a low end of 60bpm from pacemaker and high end tracking of pacemaker is seemingly keeping me in ventrical rhythm at this time.

    Main problem is AA as you discussed. Much Luck. Nick

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Bonnie Bates-Sharpe (---.coxnc.rr.com)

    Date: 04-30-02 19:32

    Hi Jake,

    I too have HCM with a long history of atrial fibrillation. In a four year period I was cardioverted 11 times, took Amiodarone and Tikosyn at various times, had a myectomy, and took other meds. Nothing worked for any period of time. A year ago I underwent a Maze 3 procedure at the Cleveland Clinic in addition to a second myectomy and a valve repair. I have not had atrial fibrillation since.

    I would investigate all measures. I was told a Maze 3 type procedure can, at times, be done without opening the chest frontally. I was not a candidate for this laser procedure but it was just one more alternative.

    Good luck with your health challenges. Feel free to e-mail me if you have questions.

    Sincerely,

    Bonnie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: A-Fib with HCM - Looking for help/advice/experiences]

    Author: Bonnie Bates-Sharpe (---.coxnc.rr.com)

    Date: 04-30-02 19:32

    Hi Jake,

    I too have HCM with a long history of atrial fibrillation. In a four year period I was cardioverted 11 times, took Amiodarone and Tikosyn at various times, had a myectomy, and took other meds. Nothing worked for any period of time. A year ago I underwent a Maze 3 procedure at the Cleveland Clinic in addition to a second myectomy and a valve repair. I have not had atrial fibrillation since.

    I would investigate all measures. I was told a Maze 3 type procedure can, at times, be done without opening the chest frontally. I was not a candidate for this laser procedure but it was just one more alternative.

    Good luck with your health challenges. Feel free to e-mail me if you have questions.

    Sincerely,

    Bonnie
    NOTE: This is a post from the previous forum message board.

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