Hello everyone. I haven’t posted on Ben’s Friends in a long time, but I’m still here with GPN and other cranial neuralgias. My latest issue is the vagus nerve. I’ve been in and out of the gastrointerologist’s office and I’ve been checked from head to toe for what might be causing serious nausea every morning - and no, I’m not pregnant! My GI doc - based on symptoms and history because all of the tests I’ve had are negative - thinks that my nausea is neurological, and that makes sense to me. He prescribed AMITRIPTYLINE. I’ve only been on it for a few days and I know it takes a couple of weeks to kick in…but I swear I’m already feeling better. So my question is: has anyone taken Amitriptyline for GPN or other cranial neuralgias, what dose made a difference, did it stop working after time, and did you have any side effects from it? I’ve been on every med mentioned in the posts on Ben’s Friends for GPN. I’ve never heard of Amitriptyline before and if anyone has taken it for GPN or other neuralgias, I sure would love to hear from you. I’m not a candidate for MVD. Thank you in advance!
Hi Nikki,
Amitriptyline has been my life saver. I first had ATN when I was 29. 25mgs of A took all of my pain away. I stayed on it for two years and when I went off of it the pain never returned.
Until last year when I was 37--yes I had an eight year remission! I sure wish that would happen again. ATN again-left side teeth, jaw, cheek and ear. This time 40mgs took all of my pain away.
Three months ago out of nowhere my right side joined the party despite the 40mgs of Amitriptyline. So now bilateral ATN. Right side-teeth, tongue, under my lip, cheek, jaw and ear. Increased to 60mgs and am pain free again.
Yes, I have had some side effects. My body always get used to it after about three weeks and I live my life very normally. For me a new dose takes from two to three weeks to really kick in.
Dry mouth-use biotene spray from the drug store and keep water with you. Also because it decreases saliva be diligent with keeping your teeth clean
Fatigue-I take it around 7pm once I am settled and I am out like a light by 10pm. I have never slept better! At first mornings are a bit rough--feels like being hung over without the fun the night before-hehe!
Concentration/Motivation-feel a bit spaced out sometimes and don't have a ton of energy. I always make sure to plan a quiet couple of weeks around an increase to rest, relax and gets lots and lots of sleep.
Weight gain-it really makes me think about food ALOT. It is just cravings though. You can learn to ignore them. I have been on A. for over a year. I gained about ten lbs. and have lost 5 of that since.
A. is not for everyone, some people do have strong side effects. But let me tell you, that if you can make it through the first couple of weeks alright then it is well worth it to be out of pain and get your life back!!
Good luck and let me know how you are doing.
justjane37 said:
Hi Nikki,
Amitriptyline has been my life saver. I first had ATN when I was 29. 25mgs of A took all of my pain away. I stayed on it for two years and when I went off of it the pain never returned.
Until last year when I was 37--yes I had an eight year remission! I sure wish that would happen again. ATN again-left side teeth, jaw, cheek and ear. This time 40mgs took all of my pain away.
Three months ago out of nowhere my right side joined the party despite the 40mgs of Amitriptyline. So now bilateral ATN. Right side-teeth, tongue, under my lip, cheek, jaw and ear. Increased to 60mgs and am pain free again.
Yes, I have had some side effects. My body always get used to it after about three weeks and I live my life very normally. For me a new dose takes from two to three weeks to really kick in.
Dry mouth-use biotene spray from the drug store and keep water with you. Also because it decreases saliva be diligent with keeping your teeth clean
Fatigue-I take it around 7pm once I am settled and I am out like a light by 10pm. I have never slept better! At first mornings are a bit rough--feels like being hung over without the fun the night before-hehe!
Concentration/Motivation-feel a bit spaced out sometimes and don't have a ton of energy. I always make sure to plan a quiet couple of weeks around an increase to rest, relax and gets lots and lots of sleep.
Weight gain-it really makes me think about food ALOT. It is just cravings though. You can learn to ignore them. I have been on A. for over a year. I gained about ten lbs. and have lost 5 of that since.
A. is not for everyone, some people do have strong side effects. But let me tell you, that if you can make it through the first couple of weeks alright then it is well worth it to be out of pain and get your life back!!
Good luck and let me know how you are doing.
Hi -
When my GN was at it's worst (pre-MVD) I was on 900 mg of Trileptal and my neurologist didn't want to go any higher and he suggested adding something from the antidepressant family as there was evidence that they could help in conjunction with my other medication. I ended up taking Cymbalta which helped with the overall pain, but he did offer me Amitriptyline as an option and I declined since I had taken it previously and couldn't stay awake on it. So it is viable from my experience that a medication in this class could be helping your pain.
I'm glad to hear it is relieving some of your GI distress. I had chronic low-grade nausea with my GN and was able to control nausea flares 1-2x per week with Zofran. But it sounds like your GI distress is much higher than mine was.
Best Wishes -
Jessica
Yes. I did have the surgery and was helped by it but I did have residual pain at base of my tongue so I started taking amitriptyline at 50 mgs. It took about 4weeks to work but I was thrilled. It was a threesome for me. #1 it relieved the pain. #2. I was able to sleep. and#3 I was no longer depressed. I’ve been taking it for almost 2 years. As an added point before surgery my symptoms beside the pain was daily nausea and vomiting, restless leg syndrome, very bad tremors, and choking on my on saliva. I had these problems for years and became homebound. In only 3 days after starting Gabapentine every one of those problems vanished completely!!! Good luck and I just want to apogize to everyone for being off line for so long.
Suzanne said:
justjane37 said:Hi Nikki,
Amitriptyline has been my life saver. I first had ATN when I was 29. 25mgs of A took all of my pain away. I stayed on it for two years and when I went off of it the pain never returned.
Until last year when I was 37--yes I had an eight year remission! I sure wish that would happen again. ATN again-left side teeth, jaw, cheek and ear. This time 40mgs took all of my pain away.
Three months ago out of nowhere my right side joined the party despite the 40mgs of Amitriptyline. So now bilateral ATN. Right side-teeth, tongue, under my lip, cheek, jaw and ear. Increased to 60mgs and am pain free again.
Yes, I have had some side effects. My body always get used to it after about three weeks and I live my life very normally. For me a new dose takes from two to three weeks to really kick in.
Dry mouth-use biotene spray from the drug store and keep water with you. Also because it decreases saliva be diligent with keeping your teeth clean
Fatigue-I take it around 7pm once I am settled and I am out like a light by 10pm. I have never slept better! At first mornings are a bit rough--feels like being hung over without the fun the night before-hehe!
Concentration/Motivation-feel a bit spaced out sometimes and don't have a ton of energy. I always make sure to plan a quiet couple of weeks around an increase to rest, relax and gets lots and lots of sleep.
Weight gain-it really makes me think about food ALOT. It is just cravings though. You can learn to ignore them. I have been on A. for over a year. I gained about ten lbs. and have lost 5 of that since.
A. is not for everyone, some people do have strong side effects. But let me tell you, that if you can make it through the first couple of weeks alright then it is well worth it to be out of pain and get your life back!!
Good luck and let me know how you are doing.