zipping

I do the same thing RachisCool! I have pain sometimes when I am running around but it's usually not nearly as bad as when I sit down!

I have MVD surgery for TN 11 months ago. The electric shock was immediately gone after surgery, but left me with total numbness half of my face (including tongue, lips, mouth, roof of mouth, basically everything was dead on the right side). I lost part of my hearing after the operation, but that was fully recovered after two weeks. I slowly regain feelings  in my face and is now 90% numb free. I was thrilled to be off all medications the first 4 months after surgery. Starting 3 weeks after surgery I began feeling faint movements near my temple. It was exciting because I felt that meant my nerves are movement and waking up.The movements never stop. It was constant 24/7 and it became a little more intense day by day. By 4 months post op the facial movements were out of control. It spins round and round like 100 miles an hour in my face to a point that it was all twisted into knots. I can actually feel the nerve fibers twisting, pulling and is very painful. For some reason the spinng/twisting gets worse when I'm driving or in an elevator. It seems to move with the speed of motion. I even checked myself to the ER once, but no one can understand what I'm having. I have had 2 MRI's within 6 months and both came out normal. My the movements intensify even more. I'm on different meds but nothing seems to help. I noticed if I keep busy or talking, then I don't feel the intensity of movements as much. But if I stay still (sitting, particulary lying down or not talking) I can feel every filber and facial muscle contracts to a point that now my upper and lower lips are moving along with the movements. Sometime that muscle contraction pull so tight that my lips are lopsided. My neurologist doesn't know what to do any more. She is running out of medication to give me. She is suggesting botox injection to stop the muscle movements. I read that a person should have have botox injection around the lips/mouth area. My neurosurgeon (MVD) kept on telling me this is normal and it can take up to 18 months. I don't believe him because I'm not numb any more. This is muscle contraction and involuntary movements. My neurologist has diagnosed me with hemifacial spasm (HFS). I don't have the eye twitching or mouth twitching...just lost of movements going on in my mouth and lips. Currently I tried accupunture and body massage. I'm going again this week so this will be my second time. Not sure if they help, but the body massage felt good. By the way for those that are afraid of accunputure, it doesn't help.

Does anyone have problems with non stop factial movements 24/7? I did not have this problem prior to MVD surgery for TN

Rach and everyone,

I've been at it for 8 years. I went through the shock of learning I have MS at 47. There's a young lady of 71 out there at it much longer who might agree with the following: There is no magic bullet for this. TN comes and goes. We all have to manage through the comes. I can speak to medication Tegretol only.

At lightning bolt times, increase the dose is worth the costs of side effects. More often, adjusting eating and brushing is the way to get through lesser pains.

That certainly sucks to hear for the younger folks. I think adjust game plan and expectations will make you happier. I just got through 2 annoying weeks. Nothing major. I'm happy to report I brushed normally this morning.

eddie13

It would be interesting to find out if there is any research having to do with TN and stress and fatigue.  I know that I tend to have an increase in pain attacks when I have had a busy day and am tired.  I also think there is a correlation between TN attacks and increased stress.  Of course your medication is suppose to last until the next dose.  I have found that it's important to take medication on a regular schedule at the prescribed times.  I know if I am late with taking my medication I have more breakthrough pain.  If you are adhering to your particular schedule then perhaps you should talk to your doctor about the dosage you are taking.  As far as sitting or lying down causing your pain, is it possible that it is a particular pressure on your head that is setting off the attack.  I know that when I lie down I am better off on my right side as lying on my left side tends to give me TN trouble.  You shouldn't have to be in agony, however, and I urge you to follow up with your doctor.