choosing the right meds

[tyler]

Im 17 and my doctor put me 75 mg of atenenol a day. I have no symptoms but i have a strong family history so he said it was safer. I had no issues before the medication but since i get horribly lightheaded, and i have blacked out more than once, and im also experiencing a lot of fatigue. I am going to see a cardiologist at UCLA on Nov. 24, and i am going to ask about my other options. I am hoping to hear some of your stories and opinion on the other medications, and also if there is a difference between the different beta blockers, ive heard it called different things or is it all the same? I ask because i feel as if i were better off without the medication and i would really like to know all of my options.

[Lumax]

My doctor put me on Toprol 25 mg about 1 year ago. When I went on the Toprol, I began to feel heart palpitations and shortness of breath. On two occasions it was bad enough that I was considering going to the ER. I went of the medications and never felt those symptoms again. Last month my doctor asked to try the Tropol again so I did. Doctor said to take it at night before bedtime and it has made a big difference. I have felt palpitations on 2 occasions but nothing bad. It does make me feel weak when I exercise.
Apparently when you first take the medication there is a higher concentration released into the body that gradually decreases throughout the day.

[Pam Alexson]

Yes Tyler taking it at night or perhaps dividing it up a bit maybe 25 mg .. 3 times a day as opposed to all at once, would also help. Be sure to tell your doctor about your difficulties with starting this med. The only way the doctor knows that you could be having difficulties is if you inform him. I am assuming that you started this gradually and not all at once? The beginning to 6 week titration or adjustment of medication in your system takes about that time as your nervous system has to adjust. Might also be a good idea for you to be checking your BP ( blood pressure) to see if you are bottoming out and write it down with times so your doctor can see the pattern in relation to your dosing of the med. Sorry but with HCM we have to develop a fair amount of self assessment( like a minny doctor) as this will be a life long process of monitoring and assistance with adjustments and management from the HCM docs to help us maintain balance and wellness .

Yes there are other beta blockers(BB) and also calcium channel blockers(CCB) that are used to relax the heart and soften the beat as this is a good practice with HCM hearts that are designed to overwork per the nature of the disease. The over working over time can cause several negative remodeling projects or changes in the structure to take place. There will be side effects to taking meds even after you adjust and you probably will not like some of them especially the part that slows you down and makes you tired and not able to do what you used to do. You should also be able to strike a balance and not be totally miserable. Unfortunately at the end of the day, you have HCM and it should always be treated for your safety and better health of your heart.

Welcome to the HCMA message board. Do Make contact with the HCMA office as soon as you can it will be a great call.

Pam

[Linda]

Tyler - Welcome. I'm glad you've found us. Your visit to the cardiologist is fast approaching. I hope you and your family have time to contact and talk with the HCMA office before that visit. They can help you organize your thoughts and questions, give you info that will help you feel better prepared for the time you will have to spend with the docs.

You say you have a family history. Have others in your family been on our website?

Best wishes, we'll be watching for updates.

Linda

[gfox42]

Hi Tyler,
I think the others have already said it: all of this takes some adjustment at first. Some of it is physical adjustment -- getting used to the drugs. And some of it is mental adjustment -- getting used to the idea that you have a lifelong heart disease. They both take time.

Yes, talk with your cardiologist about which drugs you should be on and what the dose should be.

Gordon

[HOCMark]

Hey, Tyler. I have been on several different medications at various doseages since I was first diagnosed about 10 years ago. My experience is that the first week or two was sometimes a little uncomfortable while I got used to the mediication. If I did not feel good after a few weeks, I would go back to my cardiologist for a change in dosage and/or frequency. Taking the medication at night sometimes helped me, too.

If that did not get me feeling how I wanted to feel, we moved on to another medication. Some medications I was on for a month, others worked for me for a few years. Your cardiologist should understand that everyone reacts a little differently to each medication. Be a little patient, but also be firm and request a change if you truly do not believe a medication/dosage is working for you. It may take some trial and error but you will find the right medication and dosage.

[tyler]

Thank you everyone for your help. I have been on the medication for a little over a year now. I do take the medication at night before i go to bed ...if i do not i find it hard to function due to the side effects. However the side effects have increased over time. Is this common place or should i be more worried about that?

[Pam Alexson]

That clarify's things a bit . If your BP can tolerate it an increase may be in order to reduce symptoms or a change may be in order or even it could be an addition of another type of med. You need an appointment at a center of excellence and a call to the HCMA office will be able to help you sort through whether you are making the best choice for you.

[dhaxelbarqs]

It depends on your doctor on how will you take your medication. They are the person who know how's what you medicine is and how are you going to take them.
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[mbcube]

Tyler - How did your meeting with UCLA go? Who did you see?
Regarding Meds - Have you & your parent also discuss the meds, timing and dosage with a trusted pharmacist. They can work with your doctors in adjusting things to suit your symptoms.

Keep us posted.