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**Reenie** · 09-11-2007, 12:08 PM

Re: Toprol-xl Side Effects

I know that many beta blockers, like toprol, have side effects and that switching to a different one works well for some people. I don't know what to tell you about him putting you through the hoops like this, but maybe he's just being ultra conservative. Something as simple as switching to atenolol, propanolol, etc could do wonders for you.

**Linda** · 09-11-2007, 03:49 PM

Re: Toprol-xl Side Effects

Domenick - Have you called the HCMA office yet? If not, please do so. You will be pleased with the info you will get. Great picture! Linda

**BAK0226** · 09-11-2007, 04:03 PM

Re: Toprol-xl Side Effects

Domenick....The only drug I am currently taking is toprol xl. I take 200mg daily. And yes, I recognize ALOT of the side effects you listed. Some are sporatic and some are not. I do have sob however I think mine IS due to my obstruction. At this point none of the side effects I experience are to the point that I would think about switching meds. But I do know what you are talking about! Barb

**Sarah** · 09-11-2007, 09:20 PM

Re: Toprol-xl Side Effects

I've been taking some kind of beta-blocker for 25 years and every doctor I've had has always changed me from one to the other at my request, without any big drama. I even changed from them to calcium channel blockers and back again without a fuss. However, they all have similar side effects, but some are worse than others--it is just a matter of finding which you tolerate best.

I've been on Toprol XL for several years, five actually now that I think of it, and I have just about all of those side effects at one time or another.

(The problem I have is that the Toprol keeps my heart rate down and otherwise I'd need to be on a pacemaker.)

**cschlatt** · 09-12-2007, 09:54 AM

Re: Toprol-xl Side Effects

I've been on Toprol-Xl for a few years now. I have fatigue and bad/vivid dreams, but these haven't been severe enough for me to switch to another drug.

I would talk to your doc about the side effects and changing to another beta-blocker. I would think your cardiologist could let you try another beta-blocker to see if you do better and the side effects decrease.

Best of luck,

Caroline

**jorgusen** · 09-12-2007, 12:24 PM

Re: Toprol-xl Side Effects

I too have been taking toprol for a number of years. My biggest problem is,with the drug, is that it slows my heart rate down at times where I get light headed and a little dizzy. A lot of the syptoms you listed can be just daily aches, pains and problems, that might not be associated to your condition or your meds.
I have a great cardiologist,but since I only have one life I went to a HCM spec and more tests to make sure I was doing everything I should. It turned out that they both had almost identical plans for me. It your life you have to be your own advocate.
Antime you put some in your body that changes the way your body does business, it is going to effect something good and bad..Choices?

**rgong** · 09-13-2007, 09:55 AM

Re: Toprol-xl Side Effects

Domenick,

I saw from you intro post that you're seeing Dr. Sherrid as your HCM specialist. When I first started seeing him I was on 50mg of Toprol-XL. Both Dr. Sherrid and my previous cardiologist (non-HCM specialist) both told me that for HCM, you really don't see much benefit until the 100mg level of Toprol. I suppose the flipside is you'll see more side effects at the higher dose as well -- I went up to 100mg but had to back down to 50, mainly due to fatigue. I won't discount the fact that you could be seeing some significant side effects from the Toprol at the 50mg level, although I have to agree with the previous poster that some of the things you're experiencing may be due to reasons other than the Toprol. That was a pretty long list of stuff.

On the question of having the metabolic stress test... I'll have to agree with Sherrid on this one. I don't think he's just trying to milk insurance payments out of the system -- his practice is borderline overwhelmed as it is. In my experience with seeing him, I don't think he would call for a test unless he thought it was necessary. In looking at the list of your symptoms, you listed "dizziness, chest pain, shortness of breath - especially with climbing stairs" and I immediately thought, hmm, sounds like he's obstructed. Not suprisingly, Sherrid put you through a stress echo, the results of which indicated you weren't obstructed. So it seems logical that the next step would be to make sure there isn't some non-HCM heart-related condition that would explain your symptoms, since *in general*, 50mg of Toprol shouldn't make you feel that bad. But it certainly is a possibility, and every person is different. I'm certainly not a doctor, but I think I understand Sherrid's logic in progressing through the battery of tests before tweaking your meds, given the symptoms you report.

Having said that, I agree that yes, you have to be your own advocate. Give Dr. Sherrid a chance to run the tests, and I bet he'll agree to switch your meds if he can't find any objective data to explain your symptoms. I've made it a point to be self-involved and self-educated on this topic, and he hasn't held that against me -- on the contrary, I believe he greatly appreciates that.

Best,

**Chuck** · 09-14-2007, 04:11 PM

Re: Toprol-xl Side Effects

"...especially with climbing stairs".

um...yeah. big time. but its not like your standard "sob"...it feels to me like I'm wearing cement shoes. I can feel the heart "trying" to go faster, but it can't. there's no real "huffing and puffing"...legs just become heavy, and I have to stop.
and I'm only on 50mg of toprol xl/twice a day.

(actually, doc just had me cut down to 1, and start taking cardizem, because of some "even more annoying" (!) side effects.

I've been on a couple of other b-blockers over the years...they did the same thing. If anything, toprol isn't as bad, I imagine because its time-released.

I wish we didn't have to take anything. I still question the actual benefit of being made to feel like a stump for the rest of your life.

**Domenick** · 10-03-2007, 04:48 PM

Re: Toprol-xl Side Effects

Thanks everyone for your responses - I truly appreciate the feedback and advice.

I wanted to give you all an update - for what it's worth.

I had the metabolic stress test a couple of weeks ago. I performed within the "normal range" - comparable to someone without a heart issue - and it was decided that either my weight or the low dose (50 mg) of Toprol XL is a factor. The doctor reminded me that I'm "obese, but not really obese" since I am more muscular than fat (6', 230 lbs and built like a retired football player). However, like any good doctor, he reminded me of the wonders that weight loss could do for my condition. Always good advice. But I reminded him the problem didn't exist before I started Toprol and began after being on Toprol - while the weight has been holding steady somewhat for that time (there's been between a 10 and 15 lb. increase in weight since starting Toprol two years ago).

The doctor wishes to discuss a protocol that sounds so foreign to me: he wants me to try, over an 8-week period, an increase of Toprol XL and then at some point over those 8 weeks he wants to add to the increased dose of Toprol a dose of Cardizem.

Over this 8 week trial, he and I are supposedly going to trade notes on side effects, and the effects of raising the Toprol and adding the Cardizem. I'm not sure why raising the medicine will make the SOB with climbing a lot of stairs go away - but he thinks if my heart rate is slowed and my heart is allowed to fill more between beats, then there will be less SOB with exertion.

However, before subjecting myself to guinea pig status, I am going to ask all the pertinent questions and collect all the pertinent information. I may even seek a second opinion.

I've seen the side effects of Toprol and I'm going to look into the side effects of Cardizem and see what effects the two together have in the materials available on the web, if any. I certainly don't want more medication, but truly believe that if it helps, I'm all for it.

I would have discussed some of the other effects I listed in my first message, but he didn't have the time to stay on the phone with me and insisted we meet in person to discuss this.

Any thoughts on anyone's end here would be welcome. I am planning on calling the HCMA office to discuss this with them too once I've done my due diligence on these medications and their effects and prior to the sit-down with the doctor to discuss how I can be a guinea pig for big pharma - sorry more skepticism there.

**Sarah** · 10-03-2007, 10:39 PM

Re: Toprol-xl Side Effects

You aren't a guinea pig for big pharma--you're a guinea pig for _yourself_.

The cold hard fact of the matter is that there is no way to know how you will react to a medication until you take it. Sure, there are the normal parameters of what _should_ happen, of what is statistically most likely to happen, but the bottom line is that everyone is just different enough to make 100% predictions impossible.

But you must always keep in mind that the reason they hand out beta-blockers to us is because there are studies that show improved mortality rates with long-term use. So we do know that much--you are more likely to be here longer, even if it is a more limited and suckier longer than you wanted. You have to include that in your due diligence--how much life and what kind.

Your doctor is not trying things out on you for fun--he is trying to scientifically give you the best care he can, because there isn't any other way to know if the meds will help you.

Sherrid is a nice guy, I've met him. I'd don't think he's leading you down the garden path. But the final decision is always yours. And he knows that, which is probably why he's suggesting what he is.

Keep us posted.

**Chuck** · 10-04-2007, 11:20 AM

Re: Toprol-xl Side Effects

Originally posted by Sarah View Post

But you must always keep in mind that the reason they hand out beta-blockers to us is because there are studies that show improved mortality rates with long-term use. So we do know that much--you are more likely to be here longer, even if it is a more limited and suckier longer than you wanted. You have to include that in your due diligence--how much life and what kind.

really? this is news to me, and I've asked the question directly in the past, (why do I need this?) and not been able to get a direct answer. There seems to be conflicting information about all this...like, for example, the statement has been made that HCMers live typical lifespans...but they won't give us life insurance. If we live typical lifespans, how can anyone say that these drugs make us live longer?

Originally posted by Sarah View Post

Your doctor is not trying things out on you for fun--he is trying to scientifically give you the best care he can, because there isn't any other way to know if the meds will help you.

One would think. But it doesn't seem very scientific, to me, to give a patient something that makes them feel bad, and then when they complain, give them more of the same thing that made them feel bad in the first place. (keep in mind, that this patient felt fine before taking any drugs. I understand that this isn't the case for many, if not most of the posters here who have a much more severe case of hcm.)

anyway, I did my little experiment with adding cardizem, and it was a dismal failure. and expensive, too. I could only manage it for a few days, and I was in such a "fog", I couldn't function. couldn't focus. I felt dangerous driving to and from work. Then I backed my into my car (thankfully, it wasn't someone else's, or a kid or other person) because I was so spaced out.

no more of that, thankyou. I can't live like that, wandering around, smashing into things.

**Domenick** · 10-04-2007, 04:32 PM

Re: Toprol-xl Side Effects

Sarah and Chuck - I think you both are right. The medicine is intended to make me feel better and live longer and I am ultimately the one who chooses the route to take. Thank you for your thoughtful comments and food for thought.

I read and re-read the posts on Cardizem and Toprol and fear what the two together will have in store for me - the side effects I've felt since starting Toprol at such a low dose have not really subsided and I fear will get worse with an increased dose - particularly after reading some of the posts here. I will certainly add other's experiences to my due diligence.

There's a lot more to the story - particularly with respect to the doctor I see; the way he and his staff have handled my care; and more that I'd rather not rant on about on this post except to say that being prepared and arming yourself with knowledge - especially about what you're asked to put into your body - rather than blindly following a doctor's advice is the best advice I've received thus far.

**rgong** · 10-04-2007, 10:48 PM

Re: Toprol-xl Side Effects

Domenick,

After reading through this thread again, I'm wonderin' ... why does Sherrid have you on Toprol? Almost everyone I've come across who has been on Toprol or some other BB, including myself, is/was obstructed. You're not obstructed, and I'm assuming you didn't have any significant SOB prior to the Toprol.

Given the side effects you're already experiencing, I have to admit I also find it curious that Sherrid wants to increase your dosage plus add Cardizem to the mix. When I was obstructed, I recall he told me more than once that I wouldn't see any significant benefits from Toprol until I reached the 100 mg dosage. In the short time I tried that dosage prior to my surgery, it just made me more tired, with little symptom relief. Perhaps I didn't give the higher dosage enough of a chance.

While I have personally benefited greatly from Dr. Sherrid's care, I will admit he may not be for everyone. Theoretically, you will have nearly a lifelong relationship with your HCM doc, and you need to respect and trust this person. You may have already done this, but call Lisa at the HCMA office and discuss 1) the med regimen that Sherrid is taking you through at the moment, and 2) alternatives for an HCM doc, if you continue to have doubts about your current doc's motives and competency. Don't know if you could/would go up to NEMC (Boston), which is the next closest "center of excellence" for HCM. I have yet to come across a negative comment about the care people receive up there in the few months I've been on this message board.

By the way... I was on Toprol + Cardizem for a few weeks after a post-op bout of arrhythmia. That combo stopped the arrhythmia dead in its tracks... and initially made me more tired and SOB. After a couple of weeks, I adjusted and/or my heart just got stronger in the course of recovering from surgery, and the SOB largely went away.

In any case... best wishes, regardless of who you see and what your regimen, the goal is to get you feeling better and living longer.

**MaryO** · 10-04-2007, 11:34 PM

Re: Toprol-xl Side Effects

Dominick... For a short time, I was on 1/2 of the lowest dose of Toprol XL (I think that was 12 1/2 mg.) and I couldn't tolerate it. I'd start to get out of bed at night and nearly fall in the floor. I almost caused an automobile accident twice, and felt like I was in a stupor. Everything I did took tremendous effort. But a nurse at my cardiologists office, when I told her I just couldn't take it anymore, said "Oh, so you're just going to let yourself be a cardiac cripple?" To which I replied that I felt much more like a cripple on that medicine! Argh!

I've been taking Verapamil for 16 years and have never had a problem with it. The Toprol XL was added as my gradient was getting dangerously high to try to make my heart work less hard. But for me, it clearly does more harm than good.

I just got out of the hospital week before last after a six day stay to do some experimentation with medicines to try to keep my heart rhythm steady, and out of tachycardia. I had sustained svt that wouldn't convert, even with the meds in the ER, until they shocked my heart. So I understand the reasons for trying to find something that might keep that from happening. But I did not do well with the meds they tried... too many side effects. I left the hospital with instructions to take a small dose of Verapamin with Norpace, a drug to steady the rhythm. But the pharmacy couldn't get the Norpace... said it had been discontinued. By the time the cardiologist's office called me back after I reported this (five days later) I had returned to my very large (about as high as they go... 240mg twice a day) dose of Verapamil and nothing else and doing fine at present. I am considering a radio frequency ablation.

This is the "Cliff's Notes" of a series of amazing and frustrating errors by hospital staff and doctors. If I had not been doing my own research, and taken a strong position in the management of my own care, I don't know what would have happened.

It is difficult to know what is the best choice of medications, and the experimentation process can be so challenging, both for we who have HCM and our doctors. Bottom line is this... you know your own body better than anyone else. You have the right to say "no". You have the right to ask for other options. And you have the responsibility to be your own advocate.

I wish you well in your process of finding the best solution. Blessings.... Mary

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