T N since June 2015

Brain and nerves
1

Hi ya'll

I take 300 mg in morn,300mg@ noon and 600 @ bedtime but still if I laugh or scream or brushing my teeth brings me to the floor in pain. Does this ever go away.

Please send helpful book titles or does anyone know if this goes away without surgeries please!!

Thank ya'll for your time.....

2

Why not MVD surgery?  I have had TN only for a short period of time and I am on gabapentin 900 a day and the side effects are life altering.  I am still getting pain, sharp at times.  The prognosis of this disease is so clear...

3

Hi Marilyn,  Talk to your neurologist about increasing or changing your medication.  Perhaps you may need to combine meds, eg I take Trileptal with  Lyrica.  Unfortunately, this condition doesn't go away, but you may experience times of remission.

Get hold of the book Striking Back.    Also, join the TN Association in your country.  All the best.

4

Thank you for the info Patricia!! I am afraid of taking so much gabapintin as it may alter my life but this pain I would have even more without it. I pray that God will cure me and others ,like yourself from this horrific deacease.

Thanks again and Gods blessings to you.

5

Hi Karen,

Thank you for replying to my message. I feel all surgeries are just too risky and the radiation I am not sure of. So I have to take gabapintin to funtion as I am a widow now and have a 17yr. Old to put thru college. Anyway my best to you and Gods blessings to touch your life.

Sincerely,

Marilyn

6

Yes it is major surgery, but go place that specializes in this ie Pittsburg....and I am assuming you are otherwise in good health.  I am 67 and I am never going to be in better health than I am now and I have talked to many people who have had the surgery.  I want my life back.

7

Sadly, TN will not go away on its own. It may lessen or go into "remission" for a time, but it will always come back, and often worse than it was before. You can watch a microvascuar decompression surgery on Youtube. At first it seems like a high-risk surgery because it involves the head, but once you watch it being performed, you realize it's actually a fairly simple procedure.

8

Thank you.  I think many people are not given the opportunity to explore this option and not given all the information.  I have had TN only for a short period but I want to be evaluated to see if MVD would be a good option for me.  Remember most specialists only offer what they can do!

9

If you can, talk to a neurosurgeon instead of a neurologist. The neurosurgeon actually performs surgeries, and a neurologist mostly diagnoses and prescribes medication.

10

That was meant for Marilyn, of course.

11

You are so right....again!

12

I had the surgery.  It was scary...but the thought of living with this was scarier.  Unfortunately, my surgery was unsuccessful.  Have you had an MRI?  Can they clearly see the area in distress?  I had to tell my neurologist I wanted the surgery immediately,  He did not suggest it.  I had to.  Read up...and be your own advocate!

13

Hi I've got some books. They are the books that everyone that has TN will either have read over and over again or will want to read. Yhey are brilliant.

Striking back.         Insight.          Get them on line.       For info on TN join The TN association UK. Or US.   (I don't know where you are)    Look on line.         I'm in a flare up at present only mine is called SUNA.   I did have TN but it's been rediagnosed. I've had it since about 2005.     Take Care.

 

14

Hi Marilyn.I was able to go into remission for a year and detox off Lyrica at the same time ,with acupuncture.I started off 3 times a week for 6weeks.           Then twice weekly for a month and so on..The pain went after a month but I continued for 9 Months ending once weekly.Good luck.Select your acupuncturist on reputation. 

15

The important thing is to find out how many times the surgeon has performed the operation they are willing to do. Nothing to do but ask outright! The answer; 15. Couldn't get out quickly enough.So if my TN returns,I start with the hospital.They recommend their surgeons. And a hospital that is  Centre of Excellence.They have the Gamma Knife!

16

I have found a Centre and surgeon who specializes in MVD....there are only 3 in Canada...I want to go to Winnipeg for the surgery.  Wish me luck today...I am seeing my family doctor and I want to get him on board with me having the MVD

17

What surgery did you have?  The MVD?  I have had a regular MRI but need to get an MRI with the dye to show if I am a candidate for MVD.