I retract this topic.
pat im so sorry im gary and know how you feel its horific pain i didnt know that you could have pain that can hurt that bad and doctors people looking at cant imagine the pain and frustation your going through from wake up to going to sleep i hope technology can find a fix. life is to precious im 48 got this in 1998 but the atn and ad for the biggest part of it i have fought to not let it hold me back the last surgery not helping and at my age whipped me hard to feel good had nuerostimulator and deep brian stimulator and no results this was done in the last 2years i hope you can find peace with this pain imcan relate
Hello Pat, Thanks for the info on cymbalta I not sure but I think I have taken this before. I have been on so many meds before cant keep track anymore. I am just so sick of taking medicine it feels like its makes me feel worse . I know it sounds stupid but I feel like I can just deal with the pain without the meds. It dont ever stop the pain it justs makes you not care about anything. Im trying to get off some of them but it is hell and dont know if I can. My stomach hurts all the time and my muscles ache constantly, legs and feet burn, fingers go numb it seems sometimes that the side effects from the meds are worse than just dealing with the pain. I feel like all I do is complain about the pain all the time and I know people get tired of hearing it but it seems that all there is to talk about. Hope you are having a good day. I would love to hear from you again so I can complain some more. HAHA See Ya Gary
Hi Pat, I know that this topic is old, but I wanted to reply and hopefully give all some hope. I had my MVD in September 2011. When I woke up, the whole right side of my face was numb, but my chin which was also numb was killing me. My doc put me on neurontin for it, and the pain went away. However, come December- a new symptom started: EVERYTHING in my mouth on the right side went numb with pain. I could literally pop gum into my mouth and "lose" it on the right side and easily choke. ( please note I also had a stroke with my MVD and some of the numbness could be that too. No one knows). I headed out to not only diagnose myself with AD but to fix it. As of this date, I can feel all of my cheek and the tops of my teeth on the right side, plus my whole chin. I use to bite the inside of my cheek and not know it. MOST, but not all of the sensation is back there.
I have been using a facial stimulator ( heavy duty one, not a personal touch tip one) at physical therapy. I absolutely love getting zapped with that thing. They have to ground me and only shocked me once :)
THAT returned the feeling to my cheek.
I have been using a host of herbs mixed with a solution and applying it right to my face. ( DMSO) IF you have not read about this stuff, start reading it and using it NOW- seriously.
I have also been using mirror therapy ( and it DOES work).
Im gonna keep going to see if I can get the rest of the numbness and pain gone. I wont give up. I am also on alot of meds for pain, but have been able to go completely off of oxy and reduce my neurontin from 2100 to 900 a day. Neurontin never did help my pain; it just made me not burn. AND reducing it let me know that that overly tight- leather face problem I had was actually FROM the neurontin as it went away when I reduced the dosage. There was a time when I was curled up in the fetal position literally chewing on a teething ring and crying I couldn't live like this. I have come a LONG way since December and have hope again now that this problem; I can rid myself of. I am not pushing hype, just stating facts that happened to me.
Luck to all of us Ad'ers.
Audarah said:
Hi Pat, I know that this topic is old, but I wanted to reply and hopefully give all some hope. I had my MVD in September 2011. When I woke up, the whole right side of my face was numb, but my chin which was also numb was killing me. My doc put me on neurontin for it, and the pain went away. However, come December- a new symptom started: EVERYTHING in my mouth on the right side went numb with pain. I could literally pop gum into my mouth and "lose" it on the right side and easily choke. ( please note I also had a stroke with my MVD and some of the numbness could be that too. No one knows). I headed out to not only diagnose myself with AD but to fix it. As of this date, I can feel all of my cheek and the tops of my teeth on the right side, plus my whole chin. I use to bite the inside of my cheek and not know it. MOST, but not all of the sensation is back there.
I have been using a facial stimulator ( heavy duty one, not a personal touch tip one) at physical therapy. I absolutely love getting zapped with that thing. They have to ground me and only shocked me once :)
THAT returned the feeling to my cheek.
I have been using a host of herbs mixed with a solution and applying it right to my face. ( DMSO) IF you have not read about this stuff, start reading it and using it NOW- seriously.
I have also been using mirror therapy ( and it DOES work).
Im gonna keep going to see if I can get the rest of the numbness and pain gone. I wont give up. I am also on alot of meds for pain, but have been able to go completely off of oxy and reduce my neurontin from 2100 to 900 a day. Neurontin never did help my pain; it just made me not burn. AND reducing it let me know that that overly tight- leather face problem I had was actually FROM the neurontin as it went away when I reduced the dosage. There was a time when I was curled up in the fetal position literally chewing on a teething ring and crying I couldn't live like this. I have come a LONG way since December and have hope again now that this problem; I can rid myself of. I am not pushing hype, just stating facts that happened to me.
Luck to all of us Ad'ers.
P.S. If you have Dr. Sekulas number in Pittsburgh, please pass it along. I keep seeing Pittsburgh, but find info that he is from Erie... which is no where NEAR pittsburgh. Im in Greensburg, so I am hoping he IS in Pittsburgh. Did he move?
Hi Pat,
Yep I am a pittsburger. We dont live far from each other as I am in Greensburg. I at first diagnosed myself with AD but then the pain clinic doc mentioned it to me. From there, he sent me to a new neurologist that agreed but I kinda thought if this is permanent, HOW am I recovering? But then thought if it isn't permanent, why didn't it start right after surgery but yet wait a few months? I want those months back!
Oh it surely hasn't healed yet! I wish it would. I just merely got back some sensation in my cheek, and can now feel the tops of my teeth. The sides of my teeth, gums, tip of my tongue, other parts of my face and head are still numb. The only part that hurts however, is my mouth. There seems to be about a dime sized spot there of extremely painful numbness that is just completely destroying my life. At first it never waxed and waned, and was always just a constant-i-want-to-do-myself- in pain. Now, fortunately, it does wax and wane but it doesn't stop it from reaching peak plateau at night whereupon I usually find myself curled up in the fetal position once again. The pain has kept me up the last three nights and I have generally lived on nothing but soup. I've lost thirty lbs since the surgery due to not being able to eat. I can't imagine living my life this way and will fight to continue to get any little bitty bit of pain relief that I can. Unfortunately, I have a common bile duct and liver issue which has made it impossible for me to remain on any type of pain medication too long. I fought neurological lyme disease for almost a decade and finally won, only to end up with this. Life surely hasn't been easy for any of us and I definitely know what it is like to lose years already. I really just want to put this whole TN nightmare behind me. I had TN for almost seven years and now this. I'd drink frog pee if I thought it could cure me. :)
Pat
Does your pain ever briefly leave you alone for a few days? Mine seems to disappear only to come right back. :(
Pat:
I am so, so sorry. I do get breaks from my pain so I don't feel that this is AD like they have been telling me. It comes on and last for days and wrecks my life and then returns back to a baseline pain. Just a wax and wane but I always have symptoms; always. I so feel for you. Healing thoughts to you.