If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

what is the goal of medication?

Collapse

About the Author

Collapse

Chuck Find out more about Chuck
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • what is the goal of medication?

    is it to make you feel better? "symptom relief"? to make abstract numbers on a clinical test look closer to a "normal" heart? Protection against something?

    I know...I suppose the answer is "it varies by individual".

    I ask because my doc seems to be after me to up my medication, when I have no particular complaints at the moment irt my heart condition itself; my complaints, if any, relate more to the side effects of the damn drugs. I feel better, generally, without them. I've been on atenolol for several years now, but only 50mg/day. when I first started that, I felt like a lump. couldn't get out of my own way. doc said to take half a pill...that improved things some. I still felt sleepy and generally unmotivated most of the time...but for the most part, tolerable. last year, Doc convinced me to take half a pill, twice a day. said it would make me feel less fatigued if I could up the dose. I keep trying to tell him, "more pill=MORE fatigue". he says "no". its my heart that is causing the fatigue. I'm not buying it.

    Well, for about a year now, I've been taking the split-dose, like he said, and it seems to be ok that way. still not thrilled, but "tolerable". now he wants me to up it some more, and eventually switch from the atenolol to toprol. I'm not enthusiastic, to say the least. He told me to finish the atenolol that I have on hand by gradually increasing it to 75mg..then 100. when that's gone, start on the toprol. well, yesterday, I took one whole pill in the a.m., and was pretty much useless for the rest of the day. came home from work (not having actually DONE anything) and went straight to bed. I don't think I can deal, to be honest.

    and from a cursory search on the 'net on toprol and its effects....it looks to be much worse than atenolol. I'm afraid I might as well just dig a hole, and climb in.

    for someone that feels so much better "med-free", I have to ask: do I really need this?

    the only "issues" I've had with my HCM are occasional rapid heartbeat...and skipped beats. these "episodes" weren't terribly frequent. once every couple of weeks...or months. and yes, they are disconcerting when they happen. there were a couple of periods over the last 15 years where I got PO'd at the whole situation, and just stopped the meds entirely. I felt SO much better...(doc always talked me back onto them, somehow ). but when these "episodes" would occur, if I had some b-blocker on hand, I would take just 1. problem would go away in 5 minutes....and I'd be good for another month or so. why can't I do this all the time? (I asked doc, he said no, but wouldn't explain). Angina patients do that with their nitroglycerin...when they have a pain, they take a pill. why not me?

    keep in mind, also, that they tell me that all the measurements on my heart have not changed one bit in the 15 years since it was first discovered. (no family history, either).
    dx'd HCM @age24, (1989) |Gene + |no family history

  • #2
    Chuck,
    Welcome, I too am on Atenolol and about to be switched-(to what I don't know yet). 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.
    A medication such as Atenolol is used to help settle the heart so that it does not beat as forcefully. It slows the heartrate, can help with arrhythmias and can lower blood pressure as well.
    Unfortunately it is known to cause tiredness, which many of us with HCM struggle with even WITHOUT the meds.
    While you may not 'feel' the medication is helping, it is. Most HCMer's are on some sort of medication. Hope this helps a bit, I am sure someone with more knowledge on this will pop in and help you out.

    Take care,
    Pam
    It's not what you gather, but what you scatter that tells what kind of life you have lived.

    Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

    Comment


    • #3
      Chuck,

      As a long-term teacher, I suspect that the reason that you have not gotten more answers to your very legitimate question is that the answer is "e. all of the above." As a result it is difficult for anyone of us to give you a definitive answer as to why drugs are recommended. For some people the drugs make us feel better. I personally can absolutely say that my irregular heartbeats and the sense that my heart was beating right out of my chest declined with meds. Most importantly, as a result of a combination of drugs, radioablation, and pacing I can walk across the street most of the time without wondering whether I will fall down in front of a car.

      Secondly, for some of us the clinical numbers change to nearer normal. My murmur is much less with meds than without. Is that a clear sign of things being better functionally? I am not sure, but probably.

      So, yes, answer "c" is also true: That is, in some cases beta blockers and other drugs may slow the progression of thickening and/or stiffening. I know that my ejection fraction (which was very high) dropped a good 10 % points just from taking beta blockers (and more now that I am paced). That means that my heart is working much more smoothly than before, so it should slow the disease progression.

      I suspect that it is this last function of drugs that is the main one from your doctor's perspective. But, if you are unsure of this, why not ask him directly?

      Rhoda

      Comment


      • #4
        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.
        • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
        • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
        • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
        • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
        • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
        • 2011: Brigham & Women’s - Medtronic ICD implant

        Comment


        • #5
          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.
          dx'd HCM @age24, (1989) |Gene + |no family history

          Comment


          • #6
            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
            \"Hope is disappointment postponed\"

            Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

            Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

            Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

            Meds (current) sotalol, dabigatran, furosemide.

            Comment


            • #7
              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

              Comment


              • #8
                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
                Dx @ 47 with HOCM & HF:11/00
                Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                Lead failure,replaced 12/06.
                SF lead recall:07,extracted leads and new device 2012
                [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                Genetic mutation 4/09, mother(d), brother, son, gene+
                Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                Comment


                • #9
                  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
                  It's not what you gather, but what you scatter that tells what kind of life you have lived.

                  Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

                  Comment


                  • #10
                    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.
                    Jall

                    Diagnosed with unobstructed HCM in 2004 after a bad experience playing tennis
                    Graduated to obstructed HCM by Dec, 2008.

                    Life outside of HCM: Law, Photography, Tennis, Music, raising kids and camping

                    Comment


                    • #11
                      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
                      "Some days you're the dog... some days you're the hydrant."

                      Comment


                      • #12
                        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
                        "Some days you're the dog... some days you're the hydrant."

                        Comment


                        • #13
                          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

                          Comment


                          • #14
                            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.
                            Jall

                            Diagnosed with unobstructed HCM in 2004 after a bad experience playing tennis
                            Graduated to obstructed HCM by Dec, 2008.

                            Life outside of HCM: Law, Photography, Tennis, Music, raising kids and camping

                            Comment


                            • #15
                              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
                              "Some days you're the dog... some days you're the hydrant."

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X