Toprol XL (new thread)

[Jillmgk]

Kyle was prescribed Toprol XL- 50 mg- by Dr. Lever at our trip to CCF this week. The first day he took it, I cut it in half, thinking he might need to get used to it as when I started taking it for my BP, it really knocked me out. He didnt have that problem, but has started track, and came home from practice saying his legs were really tired. he isnt in bad shape, but they are doing conditioning (and yes his is modified to match his restrictions, which Dr Lever changed a bit.) maybe it was practice, but I am thinking its probably the Toprol, and only half dose. he took the full dose last night, but doesnt have practice again till Monday, so we'll wait and see what happens. he still is somewhat rebellious about the restrictions, but seems to have a better understanding and sense of cooperation since he saw Dr. Lever. I am wary of side effects for him because his answer is just not take the medicine. he will be heading to college in a few months and want him to the point that he understand and cooperates, doesnt just placate Mom.

[Pam Alexson]

As long as the XL tab is scored it can be cut .. not all xl tabs are safe to do this to and care must be taken not to crush or accidentally chew one of these tabs that is cut when it is XL. A larger portion of the med can whish into the system and it can be distributed very unequally as a consequence causing adverse effects.

The heavy legs I have had, it should go away after several weeks.

One other thing is stopping and starting medication because we do not like or are not able to adjust. This really screws with the nervous system and has the synapsis turning on and off at an inconsistent rate and makes for more of an adjustment problem each time in the future when a new chemical or the same chemical may be needed.. Our nervous system has a memory.

[mark720]

jill, he will be fine with the toprol xl just dont do what hes doing. take it as told and what pam said .your body will be confused . just think years ago i started on 200mg a day and now down to 50 so hang in there after all is done he will be happy . and hes only 17 ,meds have come a long way

[mbcube]

Its important to develop consistent habits especially with Heart meds. I wouldn't adjust his meds unless the doctor gave the OK to slowly increase dosage. Having a routine really helps. I'm always missing dosage on weekends, as my routine varies.

So Dr. Lever specifically said its OK for Kyle to participate in Track?

[Jillmgk]

The pills were scored- I used to split mine by doctor's orders, so was aware. We only did it once. He was hesitant to take it because the Atenolol caused issues. So far so good with Toprol.

yes he is cleared for track. he isnt a runner- he is a thrower, particularly discus. he has thrown shotput the past 7 years also, but now is not allowed to do weight lifting so may give that up. Dr. Lever said he sees no problems with discus at all.

[jsven33]

Jill,
I take 100mg Toprol Xl an hour before I go to bed. The first week made me feel kind of spacey. But I have absolutely nothing bad to say about Toprol XL now. I have been taking it for a year. It actually makes me feel great. I don't know what I would do without it. I can actually walk up stairs without getting winded. I have an obstruction and will probably need a myectomy, but my gradient has stayed about the same for a year now.

John

39 yrs old
diagnosed HCM 2009

[Jillmgk]

Thanks! I am hoping he rapidly adjusts too. I take it for BP but don't have HCM, and I take it at night also. Kyle is doing the same. It does seem to get you through the worst of the fatigue it can cause.

[ConcernedMom]

Hi Jill
Rose has been on Toprol XL since October, starting at 50mg and increased to 150mg after her incident last November. She takes 100 in the morning and 50 at night and hasn't had any side effects.
Good luck with Kyle going to college - Rose is just a year behind him, and I'm already feeling nervous about her leaving. I'll be curious to hear how it goes for Kyle, and how you're doing with it. Is he going far away? Rose is thinking of going to the University of Vermont, which is where I work - I have to say I'll be relieved if she stays close by.
Good luck and take care
Miv

[Jillmgk]

he is looking at a school in the Orlando area, which is very far. I think my biggest concern is that he won't be compliant with meds when he doesnt have Mom breathing down his neck keeping him on track. So far, so good with the Toprol- no complaints, which is great. Kyle has a provokable obstruction, but so far his septum is perfectly normal. He had a 48 hour Holter last week which we returned on Thursday, so i will be curious to hear the results of that. he really has no symptoms, which makes things a bit tougher (than just being typical teen boy)- he doesnt see the need for meds when he feels perfectly fine. I think he is maturing though andbecoming more cooperative, but he also can be a bit deceptive and just placate me too at times.

[ConcernedMom]

Hi Jill
I hope you are right about Kyle maturing and becoming more cooperative. I know how hard it is with teens - they simply can't comprehend their mortality. He's lucky that he's found a sport that his doctor allows him to do. I had terrible struggles with Sara. She was diagnosed when she was 12 - at the time she was a very successful competitive swimmer, and she had to give it up. Later in high school she fought her doctors to let her be on the track team - they eventually allowed her to practice but not to compete. She never had symptoms, so it was always hard for her to understand why she had restrictions. I don't think anyone in our family fully believed how serious her condition was until she died. At least Rose now understands how dangerous her illness is - between losing Sara, and getting shocked by her ICD, even though she's only 17, she takes her illness very seriously. Feel free to share our story with Kyle if you think it will help him take it more seriously.
Best wishes to you both
Miv

[Chuck]

"heavy legs" never went away, for me. and I have a relatively "mild" case, and take a low dose.

[Jillmgk]

he seems to have adjusted pretty well now. He hasnt complained of the heavy legs for a few days. taking it myself, I do know that feeling, and it does occasionally recur.

I am happy he is able to do the track still. This is his 7th, and final year, so I would hate for him to lose that chance. he is the throwing captain, as he hoped to be. Hoping he gets to make a state tornament trip this year. Last year he missed it by 2 slots (top 4 in regionals went, and he was #6.)

[LindaSo]

Jill,
I'm glad things are on track (no pun intended).
Linda

[Jane G.]

I take Toprol XL (50mg) and have for years. I like it much better than some of the other meds that the Dr's prescribed earlier. I also take the dosage at bedtime, it helps me to remember not to skip it. I went away to college after being diagnosed with HCM. While I sometimes resented the restrictions I found a way to balance living my life and living with HCM. IGood luck to you and your children.