I have pain in all three trigeminal nerve branches, on BOTH sides. Does anyone have similar symptoms? From what I've read, having this in all 6 branches is very rare, which is really worrying me. Any thoughts?
Thank you.
I have the same. It really doesn’t cause me anymore worry than having TN in any form at all. I don’t think the medication, or surgical procedures differ much no matter how many branches are affected.i am more bothered by the fact that it is bilateral. 
Christine
Yeah, that alone means it's twice the pain :(
I'm worried because maybe that means its not vascular constriction, which is the usual cause. Did you get a diagnosis of the cause?
Also, I'd love to know which medications your doctors have prescribed to you since you have the EXACT kind of ATN that I have.
Christine said:
I have the same. It really doesn't cause me anymore worry than having TN in any form at all. I don't think the medication, or surgical procedures differ much no matter how many branches are affected.i am more bothered by the fact that it is bilateral. :(
Christine
My TN involved all three branches my compression was from the petrosal vein , compressed in four areas. It is documented that its not the norm, but mine was vein compression. I now have TN on the right side diagnosed in Jan 2103 do not believe it invilves all branches from my symptoms. I guess everyones is different.
MY Best
Joanne
I had MVD in January of this year on my right side. The compression was from one vein on top of the nerve, and one from underneath. The vein on top was coagulated, but it was not possible to do that to the lower one. My surgeon did pad the nerve in both areas. Based on the MRI films, my surgeon feels the left side compression is from an artery. Although it is not proven, it is possible that my TN is from a condition I have called a Chiari Malformation.This is when a malformed structure in the cerebellum allows the brain to slump into the spinal cord area, resulting in compression . I had corrective surgery for this in 2003, and though it was successful in relieving THOSE symptoms, it wasn’t until after that surgery I started presenting with what I now know is TN.
I was initially on Topomax. ( wrong diagnosis, wrong medicine). My current neurologist prescribed Tegretol which worked very well, but I developed an allergy to it in three weeks. I now take Gabapentin, 600mg, 4x a day. I has reduced the shocks quite well, but the burning is never really gone.i did try adding Lyrica, but it didn’t help at all. My doctor feels that my Gabapentin dose is the max for me, but I have taken an extra pill now and again. As I have bilateral, I cannot reduce or come off meds, as most people do after MVD. I am hoping to have the procedure on my left side this year , but am having a recurrence of symptoms on the right. I am waiting to hear back from my surgeon to discuss what is going on before scheduling anything.
Chrisitne,
I totally understand, there are more people here online with bilateral TN, does not seem as unusual as alot of the literature has stated. Coming off the meds is something we struggle with because of all the side effects that comes with attempts of keeping the pain at bay at best. I struggle with the same issues because of the recurrence of sx's on the left side which i had MVD for. Waiting to do the right, getting a second opinion first. I hope everything goes well for you Chrisitine.
My Best
Joanne
I have the same. My neurologist said only 12% of us have it to that extent, finding out it was not MS was helpful…I truly blame mine on a lifetime of stress. I also was dx as having fibromyalgia in the mid-1990’s…I think there must be a link.
Both sides have never flared at the same time, they seem to tag team a bit, which I am very grateful for…I am not a surgical candidate either, because it is not caused by constriction…I have had nerve blocks with little to no relief. Currently my medications afford me a bit of relief and make me more functional, which is helpful.
My best
Saber
me too; both sides all three branches
was just one side for the first idk maybe year or so
but now the attacks come on both sides
also on the Gabapentin which seems to be the only thing that helps
and also the lyrica really helped but messed up side effects and i had to go off it
also have the fibro dx and RA as well
seems it's all overlapping/related
I do remember when the attacks started on the second side I felt such despair because it's hard to
believe it could get worse; I totally understand, hang in there!!
my worst episode had me totally down and out for over 8 mo.
but thank God i am living with some measure of relief today
best of luck and kind regards, jen
Wow, Jen, it sounds like we have walked the same path! I only see two differences: I do not have an RA diagnosis…but, I do have an unknown as yet to be labeled auto-immune disease…and I am on Lyrica. Not sure Lyrica works at all. I am seriously considering weaning off of that one.
Yes, mine went to the other side unexpectedly at about that same time period. I was shocked and beyond fearful. Is the quality of the pain and the actual pain itself different depending on the side? Mine is. One side is considerably worse that the other.
Wishing you warm regards,
Saber