I had surgery just over 8 weeks ago and I feel great! Today is the first day I'm completely drug free. I was completely weaned off of Tegretol about 2 weeks ago and I haven't slept since. I have spent the last year sleeping because of Tegretol, but now that I'm not on it I can't sleep at all!!
I have been drinking sleepy time herbal tea, taking baths, I exercise and eat well. I don't know what else to do. I will fall asleep for about 4 hrs and then I'm wide awake, but exhausted for the rest of the day!! I was so happy to be drug free, but now I feel like I need to go to my Dr. and get on ambien or something.
Oh Jessica, I am so disappointed for you, happy that your operation has been successful but sad that there is this awful side effect, I imagine that it will resolve eventually. I have been off and on Teg but as I always then take another it is not something I have experienced in the same way. Why not ask the MVD group as there are other members there who have experienced becoming meds free and may be able to help.
Jessica what kind of surgery did you have i'm in postive now making a decision now.....hope you find your answer to no sleep i hate that feeling the next day but at least you got off of that aweful med....i just don't feel right on it...i'm on tripteal it's doing the job but i hate the way it makes me feel....good luck girl...god bless
Contratulations on your surgery! I understand the frustration. I sleep about 20 minutes at a time and then am up for about 4-6 hours, then another 20 minutes...and on and on. Have no idea what's causing this. I'm on Neurontin/Gabapentin and it makes most people like zombies.
I went to the pharmacy last night and bought some Benadryl. The pharmacist said it's the same as Unisom but it was on sale ;) I took 2 of those last night and I slept for 10hrs. I feel awesome today. The pharmacist agreed that it may still be just re-setting my system after being on Tegretol for so long. Plus, I am a very high energy, high strung person and I talked to my Dad and brother about it and they both have trouble sleeping .... I just haven't had that problem because I've been doped up on Tegretol for so long.
Donna I went in for MVD surgery, but ended up not having a compression to fix so my surgeon unwrapped my nerve bundle and kind of just "re-organized" it and I guess by doing that, by touching that nerve that way, it often re-starts it and ends the erratic pain signals ... which 8 1/2 weeks later seems to be the case. I'm off of drugs and I feel 98% pain free and the 2% pains that I do feel really aren't pains, just kind of tiny twingy feels and my Dr. said nerves take a long time to heal and that is probably just healing. I was at my whits end and surgery was really my only long term solution. I'm so happy!
first - about the "not sleeping" i guess it will take time to even several weeks . those drugs can change the state of mind and it takes sometimes weeks to resolve that. but it will be resolved !!!
the amazing news is the pain. you are so blessed.
by the way - the 2% of pain - does that mean all day you feel that tingling ? or just 2% of the time ?
was the nerve he toched was the Trigeminal Nerve ? did you do injections before hand ?
i did injections - and it didn't help - that's why i think touching the nerve probobaly won't help :(
could he really "see" the damaged nerve ? or was he gueesing (casuse i understand it's not something can be seen in an MRI)
So what I feel, that maybe 2% is just once in awhile like twingy feeling .... maybe just for a minute or less, and it really is just more like a feeling then actual pain. And it's less and less each day. I actually haven't felt that feeling in about 3 days. It use to scare me when I would feel anything after surgery, but it has gotten better and better. After surgery actually, I really haven't had any bad pain spells ... just those minor feelings but like I said, they haven't been constant nor consistent and have become less frequent.
On my MRI, he showed me where he thought he could see a vein sitting in between where my nerve split. But, he did tell me that it wasn't a 100% for sure ... usually if that is the case, he said that you could see an artery really make the nerve move out of the way. That wasn't the case with me. Anyhow, I still felt that surgery was my best option.
During surgery, he said that he could see my entire trigeminal nerve + my pons really well and usually, in younger people that isn't the case. There wasn't any "smoking gun", so he decided that the best thing to do was to kind of pull the nerve apart and string it back together. He showed me pictures — CRAZY. So he didn't cut anything or do any permanent damage. He said my nerve looked completely healthy.
Besides taking Tegretol and Lyrica, I hadn't done anything else. I went to Dr. Paul A. House at the University of Utah.
Let me know if you have any other questions!!! HUGS
Nir Morita said:
dear jessica -
first - about the "not sleeping" i guess it will take time to even several weeks . those drugs can change the state of mind and it takes sometimes weeks to resolve that. but it will be resolved !!!
the amazing news is the pain. you are so blessed.
by the way - the 2% of pain - does that mean all day you feel that tingling ? or just 2% of the time ?
was the nerve he toched was the Trigeminal Nerve ? did you do injections before hand ?
i did injections - and it didn't help - that's why i think touching the nerve probobaly won't help :(
could he really "see" the damaged nerve ? or was he gueesing (casuse i understand it's not something can be seen in an MRI)
thinking about what they do to nerves there... is really crazy. and i wasn't afraid of that at first.. but now i think of that... it's freaking frightening...
i'm so glad for you. it's such a miracle. more over because is was very luck that even when he didn't "see" anything.. he done what he has done - and that has saved you !
did this surgeon have very good succesful rates in those kinda surgeries ?
It took me a few months once I was off tegretol to get back to a normal sleep pattern. I think that because of the pain I was in, I was never really sleeping properly which my body got used too. My kids teased me and called me "nocturnal" for awhile but now things are great.