so I have only had TN for about 6 months. I can honestly say that I am not looking forward to what looks like a really bumpy road. I am taking it one day at a time. I am on tegritol and already on my 3rd increase in dosage. I am finding little things hard to deal with. This mornign I was terrified to even brush my teeth. What is the alternative. does anyone have any suggestions.
Hi Archer1215
Firstly DO NOT ASSUME THAT YOU WILL GET EVERY DIFFERENT EXPERIENCE YOU FIND HERE.
Just stay with what you are dealing with, look, listen and learn from what others are doing and then do things YOUR way.
Even medications by brand can be different in different parts of the world so lEARN FROM YOUR OWN EXPERIENCES. It took me and my GP with help from many specialists to get me to where I am. Pain is gone, no shooting electrical face flashes and headaches I control with paracetemol and oral morphine.
In my case I had a radical parotidectomy (PAROTID GLAND REMOVED) and with it all the offending nerves.
I fully expect to have issues in the future but I can deal with them. After nearly three years of minor to extreme conditions to deal with I know it can be done. I would imagine my solution would never be representative of general TN issues but the same nerves that effect TN were causing my issues.
Keep looking, Keep learning, Keep in control, Keep Your GP onside and working WITH you and hasten slowly. It took me 18 plus months to get anywhere near a working set of medications and the chnages in that time were enormous.
Never stop research while even YOU believe tyhat YOU can improve YOUR life!
I doubt it will land at your feet first go but YOUR answers are there. Just need to find them like everyone else.
Good Luck and remember You are not alone ... ever!
Baudy!
I have only had my tnp neuropathy for a year mine is constantly hurting. Im on multiple drugs though hopefully you will find something that taks the edge off
THANKS BAUDY.
the tergretol was working great then all of a sudden it came back with a vengenous. this thing has a mind of it's own.
Archer,
I'm at 9 years. Once you get treatment settled, it won't be too bad. Not perfect but nothing you won't manage.
For record which likely does not apply to you, I'm on tegretol 4 X 200 mg / day.
eddie13
Hello
my daughter has only been diagnosed in the past couple of weeks and due to her only being 20 years old the doctors have referred her to see a Neurologist, however we have to wait till the end of September even though this referall is as an emergency.
However my daughter has been taking Reiki sessions which we think has been a help as it really relaxes her and helps with her stress levels. We are not saying that it is a cure by any means but her attacks have been less but of course it could also be that she has her medication at the right levels as well. To be honest we would have tried anything to help her with the pain control. All the best with anything you try to control the pain. Paul
Hello Archer, I agree with Baudwalker. We each have our own journey. I am on another Forum and the people there have very differing presentations of Tn and very different medications and procedures. I have been comparatively lucky so far but even so I have had many increases in medications from 200mg Tegretol twice a day to where I am now which is 900mg Tegretol and 350Lyrica. I have also had Gamma Knife surgery which does not hurt or cut the skin as it is radiosurgery. So far it has been incredibly successful although I have only been able (so far ) to decrease the meds to where I am now from 1100mg Tegretol and 450 Lyrica. I feel good but I remain apprehensive and vigilant and I stay on the Forums to continue to collect information as Tn pain can return at any time and I may need a different procedure or drug.- Valkyrie
Hello Tnhurtsme, What drugs are you taking, if you don't mind the question and also, have you had any procedures or scans?
I was on gabapentin for ten months then it quit being so effective so switched to oxcarbazepine for 3 months that worked great then it quit working so i decided to get back on gabapentin an also take oxcarbazepine my current dose is 900 mg of gabapentin an 150 to 300 of oxcarbazepine i have muscle pain side effect from oxcarbazepine i still have pain just not severe
I am looking at MVD surgery....I think that is the only solution. Although there are many specialist who do this surgery I would have it done only by someone who specializes in this and is in a canter of excellence? Where do you live?
Hi Valkyrie, what forum do you belong to in Oz ? Patricia
Still getting used to the day by day thing. i'm a busy parent. and now i am constantly distracted by the anticapation. i feel like I'm in a room with a monster just waiting for it to attack. I'm afraid to eat, brush my teeth, or even be out in public.
Trigeminal Neuralgia-Australia/New Zealand. It's on Facebook
I know that monster well. I wake every morning expecting it to be with me. I feel every cold breeze and expect it to spring upon me.. It still crouches in the shadows even though I have not experienced it since 15th April this year.
today was the first time it happened at work. it doubled in length. this time 4 minutes. i had given my co-workers the heads-up but they were still shocked when it happened. I'm on 800mg Tegretol. i've never been so scared in my entire life. i am trying not to freak out. i'm trying to see how I keep going with this in my life (and i will keep going). right now, i just can't see it.
9 years! I'm 6 months in and i'm loosing my mind. I feel like a coward. I have always felt that I had a high tolerance for pain,but this! This is too much. I keep trying not to panic but I don't know what to do. I'm on the same dosage you are. It isn't working for me.
If makes you feel better my is a constant pain that very is dull pain but it can hurt really bad stress makes it worst an i dont have triggers mine just hurts all the time
Hello
our daughter is recently diagnosed but she has found that Reiki Sessions has helped with her stress levels and has helped to manage her pain as well.
She is just about to start her final year at uni to be a Nurse so her stress levels have been through the roof with her year 2 exams etc.
It is worth a try as she said nothing ventured nothing gained.
Good luck all the best
Hi Baudwalker,
As I understand you have pain because your nerves were damaged? Did you have constant pain or only electric shocks? I have constant pain and I am trying to find ways to live with it. Do you only take medicine or do you have some other ways also to cope with the pain?