I had my MVD done Nov 2012. I have been feeling great since then. Correction…kinda great. Yes, my pain is much more tolerable. The ear pain on the left side is completely gone. The throat and tongue pain: gone. Teeth pain: about 90% gone. But my eye and nostril…and now right ear…they hurt more than I cared to admit. I thought positive thinking would make me forget about the pain. Now I know that’s impossible. I’m back on Tegretol 400mg and it helps a little. (I feel like it helped a lot more when I first started it again. I think my body gets used to it quickly.) I see a new neurologist next week. My old neuro refuses to prescribe anything at all. My GP gave me the Tegretol but won’t prescribe anything else. He wants pain management to do it. Called pain management for a new patient appt twice but haven’t heard from them yet. I just can’t believe this cycle is starting again. I’m sitting here crying and that doesn’t help the situation either. Figured it’s time to be realistic about the pain. Here starts my 12th year of pain and I’m only 31.
I am so sorry the pain is returning. It is one of the reasons I haven't had the surgery. It seems from most of the post I have read the TN has returned. It seems like a major surgery with a rough recovery only to have the TN return. I know sometimes stress makes my symptoms worse. Then the depression starts. I have had days that all I want to do is lay in bed and cry. You feel like nobody understands the pain. I am lucky that my husband is very understanding. My grown children don't understand. They think I should still be at every ballgame and function that involves the kids. They really don't see the severe attacks and I hid from them what I am able to hide. My neuro won't give me any pain medicine. He says he doesn't treat pain. Really?? I also adjust to the tegretol quickly and have to keep upping the dose. I am 60 years old and have had TN for 3 or 4 years. It must be terrible to only be 31 and deal with the pain. I will keep you in my prayers. I know it is easy for people to say keep a positive attitude and don't let it depress. That is easier to say than do when you are suffering with the severe pain TN brings. Take Care Lee
(((( Ihold )))),
Be gentle with yourself…You know I’m in a similar situation…I really do understand.
Allow yourself to grieve and be sad etc, one day at a time. If only positive thinking worked that way…I have said the same myself…some things we just have no control over…and that sucks!
I can’t believe your Neuro!! That’s wrong! Thank goodness you’re seeing a new one, I hope he/she will be more helpful and supportive…
Any way you can call the pain management clinic (again) and tell them you’re in a pain crisis in order to get an appointment sooner?
My MVD, like yours, was successful.
Unfortunately we both still have to deal with the pain, meds, uncertainty. Truth be told though, I’m so much better than I was. Although I wish things were different, I knew for me the chances were slim…MVD is not a cure, we know this yet we go in with such hope that it will be the answer, and then some discouragement…
Hopefully though because of having had our mvds are pain may respond better this time around, it’s certainly been the case for me so far…
Thinking of you my friend, with understanding and sending you gentle (( hugs )) , you’re not alone in your feelings, we’ll get through this, together…
Hope you find relief soon, Mimi xx
Make sure and ask for any type of topical med that will help…even any decent doc of any type would call you in for these:
Lidocaine patch for face
Lidocaine cream for face
Lidocaine mouthwash
Lidocaine nose spray
Any or all of these don’t drug you up
They help right now
They can help you stay LOWER on dosage
for TN meds!