Hi, I am interested in knowing when or how you were weaned off meds after your mvd surgery. I am on carbamazepine and neurotin. Immediately after my surgery on April 1 my surgeon reduced my carbamazepine 200mg. He has left the rest up to me but recommended I do it slowly starting next week. Any ideas would be helpful and encouraging. What is your story? Blessings Kimburlee
Sorry, I don't think that was very responsible of him -- I would call the drug expert - your pharmacist - any pharmacist and ask the best way.... These are anti-seizure drugs, and if you take them away too fast - seizure is possible.
People here can tell you what they did - and some had to get off fast be cause allergic etc....but nobody weighs the same, has same metabolism etc.....
My personal experience that I can safely give you is to only reduce one at a time!
Im glad you are able to be at this great stage of your journey. I was lucky enough to wean off right before MVD.
Kc, Please don't misunderstand. I am not looking for advise but instead I am looking for what your experience might have been. My doctor is very responsible and he did give me instruction on how to wean off my meds and because everyone is different, he left some wiggle room up to me. So, you weaned off all your meds before your surgery? Did you have any TN pain after your MVD? Thanks
I am glad that you brought this topic up. I am sorry that I don't have advice for you, but I am also looking for advice. I had my MVD 5 weeks ago and my husband is starting to pressure me about the vast amount of meds that I am on since I am have both TN and depression. I am interested to see what info people supply! Thanks, Aimee
Up until last week, I was on;
1600mg Tegretol XR, 180mg Dilantin and 60mg Baclofen / a day
Here’s what I was told Kimburlee…
(I have had NO TN pain since mvd a week ago)
For the first week I am now reducing to 1200mg Tegretol, 30mg Baclofen and 90mg Dilantin per day.
For the second week he wants me to do; 600mg Tegretol, 15mg Baclofen ,no more Dilantin per day.
Third week> nothing.
BUT that’s not going to happen, because…I have Bilateral TN, so at 800mg Tegretol my right side is/was controlled so I will follow everything except I will stay at 800mg Tegretol for awhile to see how the right side responds.
Everyone is different… Lets hope we dont need anymore meds but please listen to your bodies and adjust meds accordingly with doctors help.
(( hugs )) Mimi
Are you serious? Get off here and -- get back to resting!!!!! LOL
shindig said:
My MVD was yesterday and I'm still taking full doses and will start to wean down in a week or two.
I was MVD Oct. 2010, pain was controlled but I had no IQ left so I weaned myself off - 3 days before MVD so I would KNOW if it worked
- 11 weeks later light pain - went back on low dose of trileptal - took it for 2 months then gone
Weirdly enough - in the last couple of months it comes around 2% to 5% pain level for a few hours then gone-- so I only use lidocaine on my face when that happens - no meds no more (she says hopefully)....
Sorry, the way I read it - surgeon left you alone to do this!
Kimberly
kimburlee said:
Kc, Please don't misunderstand. I am not looking for advise but instead I am looking for what your experience might have been. My doctor is very responsible and he did give me instruction on how to wean off my meds and because everyone is different, he left some wiggle room up to me. So, you weaned off all your meds before your surgery? Did you have any TN pain after your MVD? Thanks
Hi Shindig, you cannot imagine how happy for you that they found these compressions responsible for your pain. Please go slow with your recovery its so important. Sometimes we push ourselves hard and pay later. Do not do this to hourself. You have been thru a big operation and you need to take it easy, remember its just temporary. Keep us posted on your recovery and all the best to you Lee LOL! I am talking to you like my kids same ages.
My Best
joanne
I am so glad to hear everyone experience of weaning off meds. SO helpful! Keep it coming.
Great to hear from you Shindig but head the call and rest your body so you will increase chances of full recovery!!!
It goes by fast!