Trigemimal Neuralgia

[TucsonNeNe]

I posted this question a few minutes ago, but have no idea "where" it is!!!  So here I go again.....

I'm a female in my 60's, diagnosed with Trigemianl Neuralgia about a year ago, and would love to hear from other females with the same problem.  Your pain level, medications you take, and anything at all about managing this condition!!  
After my first episode of Trigeminal Neuralgia,   I took Gabapentin 100mg 2x-3x a day for 3 months. The pain gradually got better and  I reduced my pills to 1x a day.  The pains  then went away for 3 months, and I continued with 1 pill each evening.  When I tried to reduce to 1/2 pill each day, I would start having some minor pain.  I didn't want the severe pain to start back again, so I continued to take 100mg each evening.  It seemed to work fine.

Then about 2 weeks ago, I started having episodes of severe pain again, although not as bad as they were a year ago.  I'm taking 2-3 pills now, hoping to tame the pain again.  I do not want to go with a higher dose unless I absolutely have to.  I've read that periods of remission, then back again,  can be part of this nerve condition.  That's why I would love to hear from others, to see what is happening with them.

Please let me hear from you!

[argospete]

Not Lady Like but give it a try?

See:  NOT A QUESTION. TRIED & TESTED. GOOD LUCK

[TucsonNeNe]

Don't worry about rambling on--sounds like you have a lot to deal with!  Sometimes it sure helps a lot to just being able to talk with someone who understands the pain .  That's why I posted here, too.  I only have the Trigeminal Neuralgia problem to deal with, and I'm thankful for that!  Hearing from others who have more to deal with than that, helps me to be able to downplay my own problems.

I'm taking 100mg of Gabapentin 2 x a day, morning and evening.  It helps the pain a lot, by decreasing the intensity, but I still have jolts of pain when certain areas on the face are touched--cheek, eye brow, nose!!, --and the "most" sensitive area  seems to change each day.  I also use a topical cream-Neuragen- that helps dull the pain, too. I get this from the drug store.  I also take supplements that are supposed to help heal the the trigeminal nerve--Lipoic Acid, Methyl-B (order online--and better absorbed by the body than what is in the kind you get in a regular suplement), B-complex, C, D.

My doctor is very good, but doesn't seem overly concerned with my condition, just describes the medication.  But from what I have read about TN, there is not a whole lot that can be done except for pain control and surgery.  I will save surgery as the last resort, since it doesn't always seem to hep either!!

I appreciated hearing from you and I will add you to my prayer list, too!!  With God, ALL THINGS ARE POSSIBLE!!!

[kosk]

Bless you all with this HORRIBLE condition....I have been going threw it for about two weeks and it has limited me to 1/4 of my life before it.Diagnosed with MS one month ago and also have a mass in my cervicle spine around c-2...everytime I extend or flex my neck my whole torso goes completley numb...very painfull also because it amplifies my rt leg and lower lumbar spine that I fractured three years ago...I was to have l4-5 fused but backed out of it.MS is TERRIBLE at least with me.I have the numbness of both hands,heart palpitations with major electric shock feelings in my heart when at rest.My feet feel like walking on hot coal after too much walking...double vision,verticle movement up and down ,abdomen numbness and the MS "HUG'"...hurts like hell.I shake alot and speach is choppy at times.I have also woke twice wetting myself!!! Yet the worst is the Trigeminal Neuralgia that I have been trying to deal with...have had fx of mandable,leg arm ,wrist and back and pelvis....would take them all over this TM....soooo damn horrible as pain goes.I can understand why they call it the suicide pain.I go out in the brush in my truck nightly just as not for the kids to see me in pain.We live in a pretty remote area in the Keweenaw Peninsula,tip of Michigan on Lake Superior,we do not have major medical access and only one Neurologist! It took me two months to get in to see him even after my wife called his office pleading my multiplying symptoms,I have a spinal tap to find out what the mass is in my cervicle spine...praying it is not cancer...but I do not care at this point,very tired of the daily pain.Do any of you good folks find it hard to deal with your doc...I feel I have nooo say in anything,can tell him how bad the pain is and he will just say"it will pass"????Well,it has not and has only gotten worse.I was given infusion and had to stop after second because of bad reaction...so I am really not on any meds except medicine to calm my nerves,blood pressue,and clonidine for hypertension.I was also given 4mg of oxycodone that does nothing at all!I am so sorry to go on and on like this...I am sure you folks think that I am crazy...it is just so new and I have nobody to talk to who may have some info or advice.I pray for all of you who may be going thew this terrible condition.I also feel better getting this out to folks who may understand my condition.I promise if I write back,it will NOGT drag on like the crazy person you think I am.Thank you ,thank you for lendind your time,and please feel better.Oh could someone please tell me what kind of pain medicine will help with the TM...THANK YOU and bless you....Kosk

[TucsonNeNe]

Thanks again for the info.

[painunknown]

thanks  for you words  you need to go back to you  doctor  ma ybe you need  to have the surgery i haveit  is really scary but is worted   and iknow  what you mean is like ours life.s change i don,t really have life  i go to work  but i,m in constant pain i only have one thing in my mind  pill all my  grand kids don,t really spend time whit me  because i don,t really feel  like playing  i feel so tired all the time and i cray a lot so is really something  i don,t want my grand kids to see  i have  a wonderfull husband  but i feel like after all this yeas he is going to get tired  try to get planty of vitamins i take vitamis like b12 b 6 fish oil  i,m so so sorry you have to miss you grand daughter graduation  and if you go out used a bendana around you face  i know mayve we look silly but and least you dont feel the pain so much  and used ice pack work a little ? god bless you my friend sorry for my writing

[TucsonNeNe]

Thanks for your information.  Your symptoms make mine seem very insignificant!   Mine were worse in the beginning (it would cause pain to stretch, brush teeth, wash face, put on makeup, talk, laugh,and just about anything), but I guess the medication has helped that a lot.  Heaven knows, it sure changes your life!  

My youngest grand daughter had her kindergarten graduation this week, but as soon as I got out of the car at the school, the wind hit my cheek and started the pain, so I had to go back home and didn't get to see her graduation!  

I hope you will be able to find some relief.  I will be praying for you along with myself.  I do believe prayer helps.