Replies to This Discussion

Permalink Reply by Betsy on August 12, 2009 at 9:53am

Our son has been on it since April. His doctors started him on this because of the results on hemagiomas, He has an enlarged heart and his heart has increased in size because of the overload from the AVMS. Since being on propranolol his heart has stopped growing and actually shrunk. They believe it may be from his AVMS shrinking. He has a follow up MRI in April to the change in the AVMS.We go to John Hopkins.

Permalink Reply by jeff on August 12, 2009 at 10:02am

ello very happy to see that its working for your son, but tell me what dosage is he taking ?

Permalink Reply by Betsy on August 12, 2009 at 12:14pm

He currently takes the 20mg/5ml solution (i think) and he gets 2ML 3 times a day. He started at .75 ML 3 times a day and we worked our way up. We are increasing to 3ML shortly.

jeff said:

ello very happy to see that its working for your son, but tell me what dosage is he taking ?

Permalink Reply by jeff on August 12, 2009 at 8:57pm

ello very happy to ear that and all my blessing to your son... but what do you mean by a solution that is taking? is he taking it by liquid ?

Permalink Reply by Betsy on August 15, 2009 at 8:17am

yes, it is a liquid. Adults would more likely have it in a pill form.

jeff said:

ello very happy to ear that and all my blessing to your son... but what do you mean by a solution that is taking? is he taking it by liquid ?

Permalink Reply by jeff on November 16, 2009 at 12:46pm

ello to you tell me how is your son doing whit the propranolol since the last time we spoke .... is the drug doing something?

take care

jeff

Permalink Reply by Betsy on December 5, 2009 at 10:38am

Sorry it took a while to reply. Our computer broke. He is doing great with the propranolol. Hi is now up to 4ML 3 times a day and his last Echo was in November and his heart got smaller again!! It is still too large, but we are heading in the right direction!! Do you or are you considering taking it??

jeff said:

ello to you tell me how is your son doing whit the propranolol since the last time we spoke .... is the drug doing something?

take care

jeff

Permalink Reply by Chris Safford on May 2, 2010 at 4:15pm

I think that the reason that more doctors don't use this drug is because
it decreases the heart rate. This would be dangerous in someone like
me, who has a 98/68 to 100/70 B/P. That would cause me to go into cardiogenic shock, which is a very serious condition.

Permalink Reply by Jackie L. Hargrove on May 19, 2010 at 12:50pm

I am on Propanol. 80mg per day...it's the LA kind..so it releases all day. My doctor put me on it when my b/p went up into the 200/137 range. My AVM is in the cerebellum, very large, and the dr. didn't think it would be wise to operate. Since being on the meds, it has slowed down the seizures and b/p is normal. I still suffer from severe fatigue and depression, but need to exercise more too.

Permalink Reply by Tammy on September 28, 2011 at 3:56pm

My son has been taking it for 3yrs. He had an AVM bleed in 2008. He started having migraines after that. He started out taking 20mg twice a day and then had to increase it to 3times a day. His blood pressure started getting to low and he would have spells of being light headed and falling out. We then got it reduced back to 2times a day. He then had radiation for his AVM and has had very few migraines since then. Now he only takes 10mg/day. It really helped him alot. We are hoping that he will be taken completely off of it next yr when he goes back to the Dr.
I wish you the best of luck.

Permalink Reply by Rosario Salinas on March 16, 2012 at 12:26pm

Jeff: My name is Rosario. I have 3 hemangiomas along my spine and hip... not succesful treatments so far? Do you have more information about this medication? Thanks in advanced