Hello: My TN first started 5 weeks ago. It stopped two days ago (with an infrequent twinge/ slight vibration evey once in a while). I am watching what I eat and being careful of triggers that seemed to cause the extreme pain before. I am so afraid of this coming back and experiencing that pain again. I am taking 100mg of carbamazepine and it is seemingly helping. I feel like there is something else I need to be doing to keep the TN at bay! Anyone have any suggestions? Anyone also taking/taken carbamazepine ( what did/ do you experience with this drug)? Thanks, K
Kyla…So sorry to hear that you’ve ever had an attack! To say they suck…well I guess that goes without saying…lol. Sadly no one can give you a list of triggers…It seems that with everyone they are different…When mine 1st started it was always when brushing my teeth so I stop brushing for a year…This is not a good idea! but at the time I was still not diagnosed and thought I might be going a bit mad. You’ll find yours and if your lucky they will be few. Since I’m on medication I only have a few…talking on the phone, swimming (this 1 kills me cause I love to swim) and sometimes when it rains or is really windy. I see your on a very low dose of carbamazepine…This is a good thing! I personally couldn’t take it…it made me feel awful (like I had the flu). So instead I take oxcarbazepine . But if its working for you then stick with it. With any luck your attacks will be few and far between. Good luck. Best wishes—Beverly
Hi Kyla,
at the risk making TN more worrying than it already is for you, you can read my ups and downs with TN on my blog at the link below. I've come through some pretty awful times with it and am still standing. The thing that really struck me when I was first diagnosed was the woeful ignorance of people in general (I'd never heard of it till I was diagnosed) and latterly, the ignorance of the general medical profession in particular. I must emphasise that this is my experience and my experience only, and if you do any amount of reading on this site you'll quickly come to realise very few generalisms apply, everyone is different.
Best of Luck
Jim
I appreciate the support and the heart felt wishes! K
Hi Kyla! My advice is to read, read, read. Go to the Help with Research/What's new..tab at the top of the page. There are some great topics covered there brought together by some of our frequent site members.
I agree-right now you are on a low dose carba, and you are near the beginning. Please don't downplay your condition on our site because you feel people here are way worse than you. Don't be afraid to ask questions and learn about your condition.
From what I have come to learn in my 7-8 months on this site is that we all have experienced common things such as adverse drug side effects, bad doctoring experiences, poor knowledge amongst the medical profession, rough times with family, etc.
Lean on everyone here for advice. Somewhere along the line we were all at the beginning wishing we knew someone else with TN.
Elaine
Elaine: Thanks for the heart-felt advice! I am reading a lot, but sometimes… I get overwhelmed by this disease. I am trying to enjoy this remission… but fearful of the 'when it comes back"!!! K
Kyla: It will come back. I know its hard, but why bother worrying? Enjoy the free time you have. Take in every pain free moment you have and do the best you can with that time. Live with your glass half full instead of half empty because you never know what the future holds.
And when the pain does come back - we are here for you.
Elaine
Thanks Elaine! I am enjoying life free of pain! I know it will be back, but I will enjoy the time I have! K
I think that having a positive attitude definitely can help keep symptoms lower. Sounds crayZe, I know. But I really think mind over matter can make a difference. Plus Tegretol doesn’t hurt either!! I find that my ATN has always like warmth and a soft blanket wrapped around my head to be very comforting. My face does not like cold, never has since this started. But the inside of my mouth does not like any foods to be too warm!! Go figure! Min
Oh I wanted to also tell you that if I do not eat at regular intervals, the Tegretol makes me very nauseous. But as soon as I eat something I am fine. 