I am currently on a rather low does of Oxcarbazepine, 600 mgs per day. I'm wondering if anyone has had much success with this med? My remission periods seem to be happening at much shorter intervals now. Should I up my dosage? Should I try different meds? I have so many questions and very few answers it seems. The last time I saw my neurologist was several months ago. She reccomended I "play" with the dosing when I have an "episode" as I call them. I am becoming extremely anxious that these episodes are going to continue to come closer and closer together with little time in between them. My life feels completely debilitated during these times of pain. UGHHHH
Eventually, it is possible for meds to quit working, remissions don't come any more, and that is when people turn to other options besides meds.
If you are not comfortable raising your dose, ask your pharmacist how to --- once I got over 900mg - I could not work, spell, remember words..... so I opted for the surgery based on side effects alone. But I had to try 3 meds with yours included. My short advise right now would be to
1. Ask for some prescription lidocaine patches or cream from any doctor over the phone
2. Get the book 'Striking Back" by Dr. Ken Casey - it has all the treatments, and everything is still the same - except that statistics of MVD surgery (if you are a candidate) now has much higher success rates - especially within first three years.
The more you learn/ask/know about this disease - the faster your chances of being able to get into a better place.
It's because of this site and that book that I've only had 2% pain come and go for over a year. But it's not over - someday it will come back and I will have another procedure... Be very proactive!
Keep Posting!
I have also had to “play” with meds as well. We are the only ones who know and have have to learn to trust ourselves.
I advise that if you up your meds to make sure you have regular blood tests to check sodium levels and blood count. Very Important!
Wo
Damaged by Sargenti Paste R/C said:
I had to play with tegretol that way. It sounds frustrating to people who don’t understand that doctors tell you to figure out the dosage yourself! I have constant pain so my experiences are different. You have another variable when the pain can come and go. I just kept upping the dose until I ended up with the max of the extended release. I would try upping the dosage until you reach the max that the doctor is comfortable with. Otherwise, you are adding more variables with possible withdrawals and then effects of a new drug. Unfortunately it takes some unpredictable period of time before u figure out what works and what doesn’t.
Wow Damaged, I can’t imagine being in constant pain like that. Is it always the electric shock feeling or does it change? That must be awful. What are you doing for management now?
Ok, I guess I don’t know how to reply to people individually in these discussions. Geez. Can someone help me out?
Bellalarke said:
I have also had to "play" with meds as well. We are the only ones who know and have have to learn to trust ourselves.
I advise that if you up your meds to make sure you have regular blood tests to check sodium levels and blood count. Very Important!
I think the differentiation here might be that you (like me) have type one TN - which is come and go lightning strikes
Those with the other : ATN have constant pain/burning/boring feeling in face
It would be wise to go up on that med first before you try others -- it worked for me - and works for many -
Go to Google Images: There type in Trigeminal Neuralgia -- they look at graphics for Atypical Face Pain
2 different types of suffering -- should be an eye opener for you.
Yes, I have type one TN. I sometimes go months between episodes. I always take my medicine though because I’m scared to death of it returning. I was hoping it would stop them completely but apparently it doesn’t work that way. Should I up the dose all the time or just when an episode occurs? What do yo take k c dancer?