We got an e-mail today from our son’s doctor suggesting that we should possibly try Propranolol. Just wondering if anyone has tried it and if so how it worked for them. Because Ashton’s AVMS are so diffuse, they feel any other type of intervention would be dangerous. His heart is very enlarged so I think it’s worth a try!!
I can’t say I’ve ever heard of Propranolol being used for shrinking AVMs, however, I have been on Propranolol for about 18 months as it was prescribed by my neurologist to help treat my ongoing headaches after my surgery. Propranolol was originally designed as a Beta Blocker to help treat high blood pressure, but it’s become one of those “wonder drugs” that can serve multiple benefits. Seeing as how my headaches could very well have been caused due to swelling following surgery, the doc may have very well just been using the blood pressure reduction properties specifically to reduce the swelling in my brain. Whatever the case, it’s worked. My headaches are few and far between these days.
On the down-side, the stuff can leave you feeling pretty lousy depending on the amount prescribed and the types of activities that Ashton may be doing. Being a Beta Blocker, it’s going to make it so that it is very difficult for the heart to get up to the level that it needs to be to compensate for physical activity. So it can make you feel very light-headed, weak, and even a bit nauseated, especially at first. I used to be into sports, would lift weights, was advanced in martial arts, but my exercise is pretty much limited to walking these days as my heart simply can’t keep up. But it sounds to me like the benefits could very much outweigh the costs right now, and it sounds like the doctor thinks so as well.
Thank you soo much for your input. Ashton is not super physical due to his motor problems. However, it is definetly something to keep in mind as he is beginning to try more. It also really helps to have this input that someone can put into words since he is only 3 and won’t necessarily be able to express what he is feeling. I agree too that we can deal with these side effects if it would help to solve the bigger problem. Thank you soo much!!
Jake M said:
I can’t say I’ve ever heard of Propranolol being used for shrinking AVMs, however, I have been on Propranolol for about 18 months as it was prescribed by my neurologist to help treat my ongoing headaches after my surgery. Propranolol was originally designed as a Beta Blocker to help treat high blood pressure, but it’s become one of those “wonder drugs” that can serve multiple benefits. Seeing as how my headaches could very well have been caused due to swelling following surgery, the doc may have very well just been using the blood pressure reduction properties specifically to reduce the swelling in my brain. Whatever the case, it’s worked. My headaches are few and far between these days.
On the down-side, the stuff can leave you feeling pretty lousy depending on the amount prescribed and the types of activities that Ashton may be doing. Being a Beta Blocker, it’s going to make it so that it is very difficult for the heart to get up to the level that it needs to be to compensate for physical activity. So it can make you feel very light-headed, weak, and even a bit nauseated, especially at first. I used to be into sports, would lift weights, was advanced in martial arts, but my exercise is pretty much limited to walking these days as my heart simply can’t keep up. But it sounds to me like the benefits could very much outweigh the costs right now, and it sounds like the doctor thinks so as well.