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AVM Survivors Network

For those on Baclofen

Hi! Terry here! I’m 6 months into recovery of my 2nd rupture and my avm is dead according to my surgeon after my 6 month angio but my question here is if you are on baclofen what is your dose? I am currently on 20mg twice a day and my OT and PT think its for the best to go up to 3 times a day aka 60mg daily to get the best of my therapies. Now my concern is I just don’t want to get the sleepy side effect (which I have not gotten ONLY when I was on 10mg twice a day when I first started on Baclofen) I have no idea why Im suddenly scared to be too tired/ drowsy. I guess it’s more like the more I improve the more I have to do type of feeling. I honestly don’t mind giving the 3x a day a try but Im just so drained of pushing my limits all the time and Im sure everyone here knows that feeling. And I know 6 months is nothing recovery wise. Im already on the hemi walker and at the verge of opening my hand. I guess I just want reassuranc of some sort

Hi I take 9 Baclofen a day in 3 doses of 3 as it’s the only drug to address the spasms I get. I’ve a spinal angioma. At first I was sleepy on this dose. But now it doesn’t affect me.

Take care

Diane

Thank you :heart:️ I already made my appointment on Friday to higher my dose. I believe the benefits are greater than the temporary side effects. Anything to get better and closer to the old me or at least to a me that Im comfortable with :+1: