Beta Blockers--feedback Please

[photchkiss]

Hi.

My cardiologist just prescribed low dose beta blockers, 20 mg per day, for me because I have a mildly enlarged aortic root. He seems very well versed in POTS--the first Dr. I've met that I can say this about, and he feels that this is the right first step for me.

I am currently being examined for a hereditary connective tissue disorder which is the likely cause of my orthostatic intolerance.

Before I take the first pill, I would appreciate any perspectives on beta blockers, particulary from those who have tried low dose and are dealing with a connective tissue disorder.

Thanks,

Joe

[Lukkychrm42]

Hi there-

As to the BB and POTS with connective tissue issues, I can't stand being off BBs. While I have other meds that I need to be more functional, without BBs my HR goes crazy. I haven't been prescribed a treatment regimen that doesn't include them so far, though I'm only 2.5 years into treatment. So far I've been on metoprolol, propranolol, and betaxolol, from 5-50 mgs per day, timed-release and otherwise. I definitely prefer timed-release. Some people think that BBs make you more fatigued, but unfortunately, for a lot of us, that's actually preferable, when we get to a lower point.

Best of luck to you!

[cardiactec]

hey there joe,

are they looking into marfan syndrome with you?

i have not been diagnosed with any connective tissue problem, but the suspiscion is there.....my mother has a dilated aortic root and is on beta and does just fine (she doesnt have autonomic dysfunction/POTS though) ........they say her aortic root issue is linked to high BP but i am wondering if it's not from a connective tissue problem....anyway, just wondering what they were investigating with you. i havent heard of any link btwn marfan and POTS, but interestingly enough, i have heard of connections btwn EDS and pots. not sure why one connective tissue issue would be linked with pots but not another kind of connective tissue problem....

[photchkiss]

hey there joe,

are they looking into marfan syndrome with you?

i have not been diagnosed with any connective tissue problem, but the suspiscion is there.....my mother has a dilated aortic root and is on beta and does just fine (she doesnt have autonomic dysfunction/POTS though) ........they say her aortic root issue is linked to high BP but i am wondering if it's not from a connective tissue problem....anyway, just wondering what they were investigating with you. i havent heard of any link btwn marfan and POTS, but interestingly enough, i have heard of connections btwn EDS and pots. not sure why one connective tissue issue would be linked with pots but not another kind of connective tissue problem....

Thanks for the note. Marfan is looking unlikely in my case, I've been examined at a top clinic for this--most likely, its Classical EDS Type II (milder form) or some overlap disorder. You should have an echocardiagram if your mother has a dilated AR. Any doctor would quickly authorize this with a family history. EDS is more associated with vessel laxity (contributing to or causing orthostatic intolerance) than Marfan. In fact, in Marfan the aorta often becomes too stiff as it progressively dilates. There are many unknowns around these disorders, I will be participating in the NIH study in two weeks lead by Dr. Nazli McDonnell on heritable connective tissue disorders. Sometimes a mildly enlarged AR poses little risk of dissection, but other times the risk is high--they key is trying to figure out what the underlying cause is and this is no small task. I have been on a painful journey to try and figure this out. Since many of my symptoms are "borderline", it makes a concerete diagnosis more difficult. But I'm quite certain it's a mild variant of EDS. Hopefully, after an upcoming battery of genetic tests, we'll know more.

Joe