I have 2 questions really, I am still lucky enough to not have pain 24/7, but when I do get the stabbing pain in my temple,and pains in my teeth and ear, they last for a week or better just ruining my days! I would like to know if that would be considered ATN rather then TN. My second question is, the meds my neuro has me on make me like a zombie, so I really want to stop taking them until an on set of pain comes. Is that wise? I get the terrible pains about 3x a year. I get the shocks all year, just not as intense. These meds do stop the shocks, but I hate not being able to live my day to day normally.
I take 3,600mg of gabapentin and norco for the pain for some reason the meds don't make me feel like a zombie but alot of people i have met say exactly what u said it makes them feel like a zombie.
Hi Jess. I am just about finished with reading "Striking Back! The Trigeminal Neuralgia and Face Book Handbook" by Dr. Ken Casey. This is a great resource for anyone with TN or other types of face pain, of which there are many types. I got it for $25 through Amazon and recommend it for everyone. You might want to consider it.
Regarding meds and side effects, I too have not found the right medication or combination of meds that takes care of the frequency and severity of my stabbing pains (Classic TN also called TN-1) without a lot of side effects. In other words, my quality of life is not what I would like it to be. I have been on Gabepentin only, Trileptal only, Trileptal with Clonazepam, Trileptal only...at a higher dose, and starting today, Trileptal with Gabepentin. I feel like a zombie about half the time, avoid driving, feel like a third of my brain is missing, have memory issues, can't work or play sports, etc. Unfortunately side effects hit some people harder than others. And with all of that said, I still have been averaging about 100 electrified stabs per day in my forehead. I feel your frustration and wish you the best.
Regarding ATN versus TN, my understanding is the the stabbing, electrifed pains are Classic TN, also called TN-1, while the more constant pain, where more than 50% of it is constant pain as opposed to sharp and fleeting is Atypical TN, also called TN-2. I sometimes have a constant pain in my left forehead as a "warm-up pain" before I start getting the TN-1 stabbing pains in the same location. ATN is not as well understood and can be confused with other types of face pain more than the Classic TN. I am not a doctor and certainly can't diagnose your situation and would recommend that you talk with your neurologist about any dosage reductions since your meds certainly sound like they are providing you some relief.
And from everything that I've read, these anti-convulsive meds are not something that you can just take "as-needed", but instead have to build up in your system to be effective.
Again, talk with your neurologist to see if there is a better combination of meds that have less side effects. When I've tried reducing my meds, at my neurologist's direction, the TN pain increased. Which means that side effects are an unavoidable issue at this point. My Mayo visit in October hopefully will bring a new perspective and treatment options.
Again, good luck to you. I'm only in my 7th month of TN and am determined to find the best quality of life possible. I know that is what we all seek.
TN is a dance…u can float through gently and try things until u find the magic mix. Or u can get frustrated and try something way out of the box and risk disppointment. I’m at a place 5years since diagnosis that I am dancing as gracefully through my days as possible. Some med changes here and there but, no big changes. I am getting my peripheral nerve stimulator replaced on Sept 10. I am more than excited. After an unsuccessful MVD and many failed block and injections I had something that was working so well. Infection set me back a little and it had to be removed for awhile. I continued to dance with the changes in meds to cover this aweful pain. It’s all in the balancing life, priorities, and what works!! No frustration just dancing a little slower until Sept 10…I pray u find the peace to dance gracefully through TN!!
Lisa26, what a great visual you have shared. That is my new vision, to learn to dance, letting go of the frustration, perhaps slower at times, definitely slower than before TN. Jess, perhaps you may try this too? I send you many prayers and comfort as you too learn to dance. blessings~~
Thank you for all of your suggestions. I try to just go with what I can not change and accept it. It gets harder when it starts to effect my job and my ability to keep up with my kids. They are more important to me than pain. I don't like for them to worry about me. I will talk with my neuro to see it maybe he can get me on better medicine. I guess its each individuals preference and what they can and cannot handle. Like I said mine is not all day every day like some people I have been reading about and when and if I get to that place my out look may change greatly. I love the "learning to dance through TN" thought also. I like knowing I am not alone. Thanks for sharing.