Please tell me what you take and if it works for ATN. I’m going to a new Dr tomorrow and I need ideas. I currently take Neurontin and it does not help near enough. Ugh! I need relief!
I have ATN and am currently having a hard time with my meds no longer working as well but tegretol worked for me for awhile. I am currently on 1200mg of tegretol. I added Baclofen a few days ago and so far its not working. I will continue to increase the baclofen to see if it will help.
Hi,
I also have ATN. I take 40mgs Amitriptyline. It took about a month to very slowly increase the dosage up to that level and to feel relief. It is working though. Also the side effects where a very dry mouth and fatigue in the morning. I am much more used to the med now and am functioning better than I have since this whole thing started :)
Good luck and I hope you find some relief!
I’m currently taking 1400mg Tegretol XR and slowly increasing my dose of Dilantin (currently on 180mg) this is mostly for my TN2 . I do have bilateral TN but my TN1 is controlled on my right, with the tegretol. I had MVD in April of this year as my TN2 was med resistant (refractory). MVD helped to reduce my pain and allowed me to reduce my 3 meds initially to just one med. Since September I’ve had to add back a 2nd med ( Dilantin) as the pain has been increasing.
Mimi
i'm type II and currently take 100 mg of amitriptyline and Percocet (10-325, 1-3 a day).
I think I've tried almost every med for pain. all those listed on KC's wonderful list and many others.
the amitriptyline isn't helping but will give it several more weeks.
is it believed that some medications are more effective for Type II?
mimi, happy to hear that Dilantin helps for your TN 2. it's one of the few meds I haven't tried. I will discuss with my doc.
me, I hope your doc appt went well and you find a medication that gives you a lot of relief.
Hi
I take 1300mg Tegretol,60mg Duloxetine, 75mg Amitriptyline, Paracetamol and Oromorph for breakthrough. All increased gradually to these doses. Hope you get some relief soon.
I had my first bad tn attack last week, nov 18. Went to the ER for out-of-my-mind pain. ER dr gave me prednisone (60mg) for 5 days and Lortab (hydro codon). The next day the neuro sent me for a brain MRI with and without contrast, put me on tegretol (200mg/3x per day), valcyte 450mg, and injections in my face (nerve block?) I’m only taking 100mg of tegretol twice a day. Seeing him again tomorrow for MRI results.
You've written that you've had pain for 12 years. I'm reticent to let on that I've had it (or them - fibromyalgia and TN2, or what I used to call AFP) much longer, because I figure that can be a downer for newer members to accept. Maybe for not so new members, too. All I can do is share with others what has helped me manage it. And it isn't Neurontin, which I've tried TWICE (2 different drs.) It helps some people, so I'm not going to say what won't and will work for anyone. But, having found my best combo a l o n g time ago, I figure I'll pass these "old ideas" along: Elavil (amitriptylene) and Xanax. Of course, I have to deal with the fact that I use an antidepressant drug and an antianxiety drug for pain. But I'll readily admit the depression and anxiety, as long as it's clear that it's more than that. The "brain disease" part is, I think, that I have an overly sensitive nervous (another inconvenient word) system which amplifies stress into pain (how fibromyalgia has been described by some for decades). You might ask: Does my body or face pain vary with stress? The answer is no, actually. So maybe after all these years, I still don't know what caused it. I realize I don't know how to finish this reply. I hope you got some new ideas from your new doctor and will share them. I'm considering a new doctor. too.
thehoward- You bring up some interesting comments. I was about to post to find out what others thought about stress, anxiety, and TN. Since I am relatively new to all this, I don’t know what to expect. I personally feel like my pain is way worse when stressed out. And each day there is stress, anxiety builds and TN2 pain becomes sharp TN1 that breaks through the meds. I hope that somehow I can learn to better deal with my personal stresses and then I feel like my TN pains might improve. Saturday was particularly brutal for me but Sunday I tried my best to breathe through the short bursts of pain (and not let more anxiety set in). My doc called in some xanax on Monday. Still afraid to take it but might consider it on another terrible day.
thehoward said:
You’ve written that you’ve had pain for 12 years. I’m reticent to let on that I’ve had it (or them - fibromyalgia and TN2, or what I used to call AFP) much longer, because I figure that can be a downer for newer members to accept. Maybe for not so new members, too. All I can do is share with others what has helped me manage it. And it isn’t Neurontin, which I’ve tried TWICE (2 different drs.) It helps some people, so I’m not going to say what won’t and will work for anyone. But, having found my best combo a l o n g time ago, I figure I’ll pass these “old ideas” along: Elavil (amitriptylene) and Xanax. Of course, I have to deal with the fact that I use an antidepressant drug and an antianxiety drug for pain. But I’ll readily admit the depression and anxiety, as long as it’s clear that it’s more than that. The “brain disease” part is, I think, that I have an overly sensitive nervous (another inconvenient word) system which amplifies stress into pain (how fibromyalgia has been described by some for decades). You might ask: Does my body or face pain vary with stress? The answer is no, actually. So maybe after all these years, I still don’t know what caused it. I realize I don’t know how to finish this reply. I hope you got some new ideas from your new doctor and will share them. I’m considering a new doctor. too.
I'm glad you picked up on the problem with the old idea I suggested, Xanax. I meant to underscore it but got lost in my own monologue. Xanax is a controlled substance and addictive but, for me, addictive means there are really difficult withdrawal symptoms. It does not mean I ever had to take more and more of it to find it useful, if that is your concern. I take 2-4 grams a day. That's not an incredible amount. A gram has to be taken when I wake up, or, after 45 minutes or so, the face pain and brain fog begins to accumulate and no amount I am willing to take will make the rest of the day as good as days when I remember the first dose (after all these years, you would think I can't forget, but I do). On good days, especially days when I keep moving (and/or take a strategic late afternoon nap), I may last till bedtime when I take another gram. I believe I can do better with a second early PM dose. The pain after exercising can be killer (as if the nervous system is retaliating for my attempts to tamp it down). If I have trouble sleeping, an additional half or one gram puts me out, usually. I am not living a pain-free life. In fact, it is 24/7, but it is managed. I really feel for people who have not found a fallback combo when a new drug or combo doesn't work. As for a non-drug answer: I take a yoga class once a week. I can't say there is much carryover, but exercise after yoga seems to find me stronger, which brings its own satisfaction. I know I should do it at home, too, but I am lazy. Cardio may reduce stress, but, as noted, exercise has its own built-in whammy, what I call rebound pain. I think the most important thing is to keep moving, whether it's shopping or housework or... advice I don't always take, but ceaselessly (fail to) learn that immobility is my enemy. Pain just settles in and deepens. Maybe psychotherapy is helpful, I don't know. It's nice to have someone to listen to all my complaints. My family and friends can only take so much. But they just increased my co-pay and I'm not sure it's worth it.
For me, nortriptyline has been the best for ATN but I've maxed it out. I was up to 150mg/day of it before having side effects and lowered it to 100mg while adding cymbalta.
Now I take 100mg notriptyline, 120mg cymbalta, 30mg oxycontin and 5mg percocet every day.