Just need to know we're not alone
 

Good day!
I have just joined this group looking for some support so that I am able to continue to support my husband. He suffered several strokes in Jan. 2010 and is suffering terribly with atypical trigeminal neuralgia.
His pain is so intense and I am watching the life get sucked right out of him. He is 48 and is way too young to lie down in defeat.
Has anyone found anything that works for this pain? He has already taken Tegratol and a slew of other medications for this to no avail. He is currently taking Vicoden and Tramadol for the pain with little or no relief.
Blessings to all:
Val

Dear Val,
I am so sorry that your husband (and in turn, you) are suffering with ATN. I'm not sure what advice I can give you - I too take a slew of medications, but only get a modicum of relief. It is better than it used to be, though - I can tell you that much - I am about 3 years into this disease, and the combo that I am using now works better than whe I first started. I would encourage him not to give up on anti-seizure meds and anti-depressants - these both are neccessary to me, alongside the opiates. I take trileptal and neurontin (anti seiz.), as well as nortriptyline (antidepr.). I take a long-acting opiate, methadone, as well as dilaudid, for break-through pain. These manage to keep it at bay longer into the day. I will gladly take some relief over none. I have no "happy ending" - I've stopped working and have applied for disability, so my life has changed dramatically, but I am mostly at peace with it at this point, having no other option.
I'm not certain that my post is of any help, this is just my story, so I hope others may come along and be a bit more help.
Best of luck ,and I hope that you will find some good info at this forum.
Lily

Val,

I'm sorry about your husband having a stroke, and at such a young age. I've had bilateral trigeminal neuralgia for 18 years now. Over the years I've probably tried most medications they want you to try to help with the pain. I've had 2 MVD's and one Gamma Knife. One of the MVD's worked great for about 10 years. About 5 years ago I had a neuro-stimulator implanted to help control my pain. About 1 1/2 years after that I had another one implanted on the other side. I will never be med free but I am free of all narcotics. Right now I take Topamax and Trileptal. I was taking Tegretol too but I was having a reaction to that so we stopped. About 4 months ago I finally applied for disability. I work part time and I'm afraid of how I would do in a full time job. I fall asleep just sitting here on the computer. If I didn't have the dr. I do, I don't know where I'd be. I will never see another dr. again. Sometimes finding the right meds is just trying the right combo of things.

Best of luck to the both of you.