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what is the goal of medication?

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Chuck Find out more about Chuck
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  • Burton Borrok
    replied
    Once upon a time, many years ago a man put on a white coat and said, “I’m going to be a doctor. I will treat people, wait until they get better on their own, and charge them whatever I think they can afford.”

    Another man put on a white coat and said, “You can be a doctor if you want. I will be a druggist and charge a fortune for medications that people will think they can’t live without. I will get very rich.”

    Another man put on a black cloak and said I will become a lawyer. Whenever the doctor has a patient that doesn’t get well, I will step in and sue him for mal practice. Whenever a drug does not help a patient I will step in and sue the drug company. I will get richer then both of them.

    Another man said I will sell insurance. I will charge double premiums to protect the doctor and the druggist, and I will get twice as rich as the lawyer ever thought of.

    Then along came a skinny little man with pimples on his face and a light shade on his head. He said he was from the IRS, and took most of everybody else’s money. - - At least he lived happily ever after.
    Burt

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  • michael obrien
    replied
    hi everyone I take 200 mg toprol daily and for the most part dont feel fatigue.I would much prefer the heavy dose of toprol than risk runs of pvc's or rapid heart rate both which scare me to death. I have noticed where 6 mos ago my beats per min. were about 50 now pulse is more like 56 on avg.I think regarding beta blockers the benefits far out weigh the liabilities.I agree with jim a forum on weight loss and exercise would be great.I struggle with weight its a catch 22. the less I do the more I want to eat.especially if Im in the house alot at night.I continue to be amazed at how some of us can do so much.some things affect me more than others ex,running gets my heart rate moving and I could probably push myself alot harder than what is safe.part of me is afraid to push myself to hard because the few times I did I paid for days.One thing Im convinced of is that my weight and general level of fitness plays a major part of how I feel physically and mentally.I also am glad to see Burton back posting you were missed.I can relate to what you said about running up the stairs 4 at a time.I was quite active even in my late 20s.I could swim 1 mile laps in the pool, run 3-5 miles, jump rope hit the heavy bag .Now I lift 4 lbs weights complete with sound effects at the end of each set.its pretty funny especially with the muscle beach types lifting heavy weights all around you sometimes and (Im not kidding I have caught people looking at me with disgust)though frustrated I cannot quit on myself because the body can do miraculous things and I dont want to contribute to my own downfall any more than I already have .so no more bacon and egg sandwiches for breakfast and 3 slices of sicilian for lunch I dont want to mention dinner because Im still struggling at night.its a practice in self discipline. A man in his 70s who was in amazing shape once told me the hardest thing to do was discipline yourself.He had made a weekly practice of fasting from sun night to tues lunch.He said he had been doing that for 40 years, I would love to have that level of discipline and motivation. well Im rambling good to hear everyone and hope all is well mike ob

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  • Chuck
    replied
    more on the exercise thing....

    weight lifting=bad for us. I have a friend at the office that has another type of cardiomyopathy...can't remember what its called, but its not HCM. anyway, he commented to me about going to the gym, and working out, etc...I asked if his doc's thought that was ok, and he said, "yeah, sure. no problem". So, when I next visited my doc, I asked the question...told him the name of my friend's condition, and asked why I can't do that stuff. the answer was simple and to the point. (LOL! we almost NEVER get that, right?? ) He said, "your friend's obstruction is static; yours is dynamic". meaning, when we bear down.."valsava" movement of any sort, the heart's shape changes, and the obstruction worsens. Whereas my friend's does not.

    I used to have a very physically demanding job. (I was a "chemlawn" man, for those of you familiar with that type of work). When I was first on the b-blockers, I wasn't very good at paying attention to my own body. I knew the meds made me tired, but I wasn't aware that the reason I had to keep stopping to rest while I was working was because of the meds themselves; I just figured it was because "my heart is week", etc, etc. well...then one day, I forgot to take my pill. I finished this huge mansion...really big lawn, lots of hills, etc, etc...in record time. I was puzzled by this...then I realized that I could feel my heart beating, and it dawned on me that I had forgotten to take my pill that morning. So I went on to the next "mansion", and paid attention to myself while I was doing the work. I couldn't believe what I was feeling. "breath in, breath out...hey what'dya know, that WORKS!". That's what it "felt" like. "breathing works". need to go a little faster? no problem..just BREATHE! with the pill....breathing doesn't work.

    that's when I "quit" the first time. reported this to my doc on the next visit, and he gave me ****, etc, etc, and talked me back onto the pill.

    The other thing: I can't control my weight on meds. Doc denies that this has anything to do with the medication, and HE'S FULL OF CRAP. (I hate tall, thin people. they suck). I'm just lazy. yeah, that's it. for years, he gave me crap about my physically demanding job. weight was an issue, even then, but at least the shear volume of work I had to do every day kept it at a reasonable level. But then I finally found another non-laborious career, and of course, I've blown up like a balloon. So I get crap about that every time I go. Look, you can't have it both ways. It took ALL-DAY exercise to stay at a mere "mildly overweight" state before; I quit my job, like you told me...this is what happens. I laugh at the "30 minutes, 3x/week" advice they give most people. a complete waste of 90 minutes, for me.

    while the meds are supposed to "protect" my heart...this extra baggage ain't doing it any favors, either. hence my proposition that "the cure is worse than the disease". at least in my case.

    (oh, and to give you an idea of the amount of work, I did the math. I walked an average of 6 miles per day...but this was while dragging a heavy weight behind me, or pushing a different one in front of me, up and down hills, as well. distance is easily figured base on material useage).

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  • mtlieb
    replied
    Jall,

    I agree that it would be wise to present your questions to Dr. Maron. Although i stated in my post that i would like to start lifting weights again, the general concensus is that it is a very very bad idea. It's due to the burst-energy thing. You don't have to wait for your next appointment with Dr. Maron to present your inquiries. Your initial visit does include follow-up phone consultation. I have even emailed him in the past.

    As someone else suggested in a previous thread, i would love to see a special forum here on the board dedicated just to fitness and weight-loss. This is such an important and hard-to-manage area for us HCM'ers, and i think it would provide much positive benefit to us all.

    Take care,

    Jim

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  • Jall
    replied
    Jim:
    Thanks for the input as I am pretty much on my own on this question at present. My local cardio is okay with me doing anything, weights, competitive tennis, even getting back into triathlons. While I am sure he is well meaning, it is also apparent that he has not read any of the consensus statements on HCM. I saw Dr. Maron last month but this question had not occurred to me at the time and will have to wait until next time to ask him. I suppose that working at a lower level but twice the time is an okay answer in the interim. Exercize has huge benefits vis-a-vis prevention of diabetes, Alzheimers and blockage of coronary arteries. The last item would seem particularly important to someone whose heart is already in need of additional blood flow due to its size.

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  • Burton Borrok
    replied
    Hi all,
    Here’s where I stand on drugs and exercise. First, the drugs I’m on are – Atenolol 100mg/day, Diltiazem TR 360mg/day, Norvasc 2.5mg/day, and Lasix 40mg/day – plus a bunch of other crap for some other conditions.

    My normal blood pressure – Systolic 140+, Diastolic 70’s, Pulse 60’s.

    I started exercising on a stationary bike with the settings – ‘Cardiac’, Age 72, Level 1, Duration 5 minutes, peddle speed 50rpm. During exercises my diastolic tops out at 72 to 73. I got away with these settings the first time I exercised, but the second time I tried these settings I was a mess for a week. I talked to my cardiologist about it and he said I would not be able to push my diastolic higher because of the drugs, and to cut back the exercise time to two minutes. He also said I would still derive cardiac benefits from that level, - and if I could handle those settings well, I could increase the duration by one minute a week – so long as I still felt good.

    Well, for the last couple of weeks I’ve been peddling for 2 minutes at a time, and I still haven’t felt good enough to reach for the three minute mark. In fact there are a number of days when I cancel the trip to the gym because I just don’t feel up to it. When I think of what I used to be able to do a silly phrase keeps running through my mind – “Oh, how the mighty have fallen.” I was the fastest kid in my High School of over two thousand – for the 90 yard dash at least, and I was able to run up a flight of subway stairs four at a time. Now I start coughing just at the thought of it. Oh well, I still sit in a chair pretty good.
    Burt

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  • mtlieb
    replied
    Jall,

    I've been pondering that same question for quite some time now, and when i've asked various docs about it the most i usually get out of them is 'don't worry, you're still benefiting from the exercise'. LoL. But from speaking with fitness and cardiac rehab folks, i've been told that all else being equal, those of us on beta blockers burn much fewer calories doing the exact same exercises as the person standing next to us of the same age, build, etc. Our hearts just aren't allowed to work as hard because the beta blockers put a cap on it. That's what they are supposed to do.

    The way it was explained to me, an HCM heart is already too strong, so we don't want to build it up any more. I dunno. Personally i'd like to start lifting weights again, but every time i bring up that subject to my doctors they get a horrified look on their faces and tell me NO WAY.

    My specialist gave me a new target rate of 110 after my myectomy, and because of the atenolol i never get anywhere near that. I guess maybe to achieve the same fitness level as the next guy i just need to work out twice as long at a lower intensity level? I'm still unclear about that to be honest. Have you spoken to your doc about what your new target rate should be based on your current status?

    Jim

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  • mtlieb
    replied
    Hi Chuck and all,

    It's sounds so cliche to keep using the phrase 'everyone's different' with regards to HCM, doesn't it? It seems like little more than a copout sometimes for when we don't know the real answers behind things, and to be honest i'll only let my doctors get away with it so much. Sure HCM is pretty rare, and sure there's a lot we don't understand about it... but there's also a whole lot that we DO know about it and we didn't just start treating it yesterday. Like Burton said, sometimes we just have to demand better from our doctors than what we are getting by way of treatment.

    Unfortunately the med situation does fall under this category, and like any disease there are a variety of meds that either work for us or don't, just like antibiotics or anything else. My own experience with atenolol has been exactly the opposite of what many here have had. It works great for me and has given me much fewer side effects than any other beta or calcium channel blocker i have tried. Sure it's an old drug but then so is acetaminophen, and good ol' tylenol works better for me than any of the newer pain-relievers on the market.

    That said, your doctor has an obligation to keep you informed as to why your meds and dosages are being changed, and why he feels you will benefit from this. Please keep us posted on how things work out for you.

    Jim

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  • Jall
    replied
    This thread has me intrigued. Like Chuck, Atenolol acts like a governor for my heart rate--its hard to get over 110 beats/minute. I am fortunate enough to be fairly active. When cycling on my road bike, or in a spinning class, I'll max out at 110 bpm, even if though I feel like I am really pushing it. Other people in my group are bouncing around between 150-170 bpm. The question is this--at that heart rate is the exercize doing any good. The conventional wisdom is that to get any benefit from cardiovascular exercize, you should be at 70% of your maximum heart rate for 30-40 minutes. With Atenolol, I am not getting to any more than about 50% of maximum. And, if you push your workout when you are at the point when Atenolol starts to act as a governor, are you doing any harm. Curious if anyone has asked their docs these questions. I am not supposed to see Dr. M till July.

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  • Abbygirl2
    replied
    Atenolol for me is a blessing and a burden. While it does help alot, I feel I am very limited with it. Although I would like to, I can not tolerate more than I am on now(75mg), without my BP dropping too low. And while at one time it helped with arrhythmias, for the past year it has had little or no effect.

    I take my meds in the evening -(can't seem to remember in the a.m. )
    so when I awake, I generally feel alright, but by late afternoon I begin getting really fatigued and my heart will race just by standing up, or walking from room to room. Sometimes it will just pound away all evening until I can take my dose again. But it does settle things down nicely, so I can fall asleep without my heart pounding in my ears. However I still have those arrhythmias to contend with.

    I have never felt that Atenolol did not let my heart rise appropriately, even during my treadmill stress test, my heart rose normally.
    When I first joined this group I was told that with HCM, medication is often trial and error, it may take awhile to get it all figured out so that you feel your best. I have been on Atenolol for 6+ yrs and we are NOW just switching.

    You may be right Chuck, I can not say with certainty whether Atenolol in small doses can be stopped and started without any problems. I have heard that it is used for things such as stage fright, anxiety etc, so one would assume it could be. Best of luck.

    Take care
    Pam

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  • Pam Alexson
    replied
    I remember way back before I was diagnosed, I was on 50 mgs of Atenolol one time daily. When I would be up nightly with terrible chest pain and bad SOB, I would take an additional chip of the atenolol. It would stop my CP and SOB and let me get some rest until the next episode. My old docs said it could not be so. Well it worked for me and I had already ruled out the crap that they had reccomended. They said I was probably depressed , suffering from anxiety or, I had GERD. The atenolol can as I found be used this way when directed by a doctor. Of course I was left to do my own directing due to the total incompetence of my local docs. In Boston they put me right up over a few weeks to 200mgs, this was in 2000. When I switched Boston hospitals they put me as high as 400mgs for a short time. That factor of stage fright relief left me frozen and in such a funk I could not think my lips into a smile. Back down to 300mgs I was markedly improved and recieved effect that helped me get through the day. Although I had a myectomy and was down to 75-100mgs for a while , I am now at 250mgs. I think my body eats it like candy. I am at a point where either it needs to go up or I need a CCB again added. Even now when my next dose is due my heart been flutters for a while as I wait to maintain the scheduled time. It calms down shortly after I take it.

    We are all different because I do not know anyone who takes this much.

    Be well.

    Pam

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  • Burton Borrok
    replied
    Hi folks,
    I do not like to guess at this or conjecture at that. It’s my life and my welfare. I make the final decision on what I do and do not do. I go to doctor for a list of reasons.
    • I expect them to run/request tests (which I agree to) to help in their diagnoses.
    • I expect them to explain what they believe is going on, what my options are, and make recommendations for me to consider. I also expect them to support me in my own research, help me obtain second opinions if that is what I want, and do many other supportive measures.
    • With my concurrence, I expect them to treat me, and keep me informed on what’s going on.

    I have no time or use for a doctor who tries to leave me out of the loop, or does not keep me informed of everything that’s going on, any more then I would tolerate any other employee that does not support my efforts with the expertise I hired him for. If he makes decisions on his own and follows his own plans without me – he is absolutely without me from that point on.

    Even the best of doctor’s have to be reined in from time to time, but in the final analysis I am in charge, and I’m the one who suffers the consequences of what happens. On the other hand, if I concur on a course of action and it proves faulty, I consider that I am as much at fault as the doctor, and would not consider suing him. I would only do that if he or she did something contrary to my wishes and I was hurt as a result.

    Make up a list of questions and things you want advice about – and don’t let him stray or brush off your questions. The minute he tries that, tell him you are paying him for answers – and you want them. If that doesn’t pull him in to give out with the answers, I’d say – Last chance doc. I want these answers, and if you won’t supply them I will be forced to go to somebody else who will.

    That usually settles things one way or the other. Heck, my life is involved, and I want to know exactly what the doctor is thinking, (which usually shows how competent he is at the same time.)
    Burt

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  • Ad
    replied
    Chuck,

    Same with me. If i run into a-fib, just 20 mg of atenolol will usually convert my heart to sinus in under 30 minutes - and make me just little more sluggish. Toprol works just as well, but i need to spread the dose over the day or else i get very restless nights

    The past few years i've become increasingly aware of the dangers of letting my heart just run if it goes out of sinus: i try to repress my a-fib as soon as possible to prevent it from becoming chronic. So far, my heart has always converted to sinus without gunboat diplomacy.

    Had a treadmill test today covered by a little dose of Toprol. The ECG showed my heart rate spinning up quite nicely with my exertion, before my legs gave out i managed 160 Watts. Oh well, my heart could have had probably a little more without to much stress.

    Ad

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  • Chuck
    replied
    Originally posted by Abbygirl2
    The reason you can not just take Atenolol and the like, on an as needed basis is because they are unsafe (downright dangerous) when started then stopped without weaning.
    I believe that is true if you're taking a huge dose. remember, they don't even make a dose small enough for me. I had to cut the smallest pill they make in half. and even that small amount is like a navy jet catching the cable on an aircraft carrier. 120 to 0 in 2 seconds. that's the effect it has on ME. But the doses I've seen some others report here in this forum...YIKES! I'd be in a coma. sure...can't stop that cold turkey. I seem to remember, a long time ago, my doc saying that it wasn't a problem for me to stop. can't remember exactly what the circumstances were...maybe when I switched from a b-blocker to a ccb. But I remember having seen that warning about "tapering", and he said, "not a problem with this small a dose".

    people take b-blockers in small amounts for anxiety. public speaking...musical performers..."stage fright" type situations. an airline pilot I know just told me that he takes one before he goes for his "check rides", because he gets so nervous.

    but anyway, Boz, your comments on the Toprol make me feel better. I have found atenolol to be exactly as you describe. it is like a govenor on my heart. it simply WILL NOT beat any faster than "x". (x ain't enough, imo!). Its an odd sensation, when I'm trying to do something. like walking up a flight of stairs. I get to the top, and I have to just stop. there's no "huffing and puffing"...no pounding heart. I just can't "go". I get a sensation of having been cement-shoed. legs won't move. what I *need* in this situation is for my heart to "pick up the pace, a bit", obviously. but it won't. so maybe this "flexibility" you mention would be a good thing.

    I do find, though, that the atenolol does take care of arrythmias for me. don't get 'em when I'm on it. and during my "bad" phases, when I went unmedicated, if I had an "episode", a half a pill would straighten it right out, pronto.

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  • Boz
    replied
    Chuck –

    Your story bears some resemblance to mine.

    The answer to the question at the top is dependant on the drug prescribed and the complaint it is addressing. I take coumadin – it protects against clot formation, and that is it. I take Toprol XL – it protects against my heart rate running out of control, but also addressed some of the “symptoms” suspected to be caused by atenolol.

    My original cardiologist insisted on atenolol. I now have a different opinion and have switched doctors. I believe that it is in fact the original beta-blocker. It is “old” technology – it is generic – everyone makes it. That doesn’t mean it’s a bad drug, but more than a few things have been learned since it was brought to market. IMHO a Dr. that insists on atenolol probably has not kept himself up to date.

    I have been told that atenolol is not as “flexible” as newer drugs with regards to heart rate. A patient on atenolol might feel tired (I always did) because the heart rate is kept down all the time – no “flexibility”. Toprol XL will allow some “flexibility”. The heart is able to speed up naturally, but only to a limit. I know that I feel much better on the regimen of medication that was begun this year. Can’t say there are any negative side effects.

    I stopped taking atenolol sometime in 2000. My only complaint at the time was the random bouts of AFib. I still had these episodes when on atenolol so whets the deal?? I stopped on my own. I was actually under the mistaken assumption that the drug was supposed to control the rhythm of my heart.

    Last spring – 4 years later - I had congestive heart failure and was found to be in AFib. I’m still in AFib now, probably will be forever. Dr. Maron did a cardiac MRI in August which showed “significant” damage to the left ventricle in the form of scarring.

    If I had stuck with my regular dose of atenolol, would anything be different today? Who knows, I don’t think anyone can answer that.

    I agree with Rhoda - all four answers in the multiple choice at the top are correct.

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