Hi was wondering on ppl s thoughts on the use of acupuncture for tn and atn. I was talking to someone and noticed a piercing on her ear the ear part just inside and above tragus she had it done by an acupuncturist for her headaches she hasn't got a formal diagnosis but suffers with frontal headaches and scalp tenderness and she said she has noticed a massive difference since . I don't want to try it incase it makes problems worse any information and thoughts on this would be greatly appreciated
That sounds interesting it's not something I have heard of. I used acupuncture for a bout of TN many years ago, and am thinking of trying it again, in the future, but am having so many other treatments at the moment! Be interested to hear more of you get any more information on this!
Hi Vicky
i've posted previously about my current acupuncture treatment. I started going after a particularly severe bout of breakthrough pain, popping pills at a ridiculous rate which were of little help. I found an acupuncturist with knowledge of treating TN. It didn't make the pain worse, in fact with me I gradually had no pain after 3 weeks (going once a week) and now I attend fortnightly and I take my Chinese medicine, along with other tablets, regularly. I had been unable to eat, swallow even, speak, clean teeth, etc, etc, without causing pain, couldn't lie down, hated going to bed, and life is great again. I urge you to try to find an acupuncturist experienced in treating TN, and give it a go. It may just work for you. Good luck. Patricia
Hi,
I have suffered from atypical trigeminal neuralgia for many years and went to an accupuncturist for about 3 months to treat this....first thing out of his mouth --and he was the head MD out of UCLA's eastern medicine practice center who was trained in both eastern and western medicine-was that he would try but that trigeminal neuralgia was very difficult to treat. and i think many of us already know that... He did tell me to avoid spicy foods, avoiding caffeine, and doing yoga-which all did help reduce the pain significantly! ...I did try accupressure points and accupuncture but it was not substantial enough to notice a difference sorry to say. Maybe I also quit too early. I went for about 8 weeks. But every person is different so this was sadly just my experience... I have found the med lyrica is the only med that has drastically reduced the pain! started working the first to second day! Good luck...not sure that helped!
Hi nurseAngela,
I too have ATN. It started out of nowhere. I am only 26 and I have no idea why I have it.
I tried MVA, didn't work. Have you tried some other operation to kill the nerve? I have 3rd part of the nerve hurting and no medicine seems to help. I am desperate and don't want to live anymore
vicky59618, I am planning to try acupuncture. I will try to book myself a time tomorrow. I am so desperate that I am ready to try anything. I had MVD three weeks ago but that didn't work. How are you managing your ATN pain? I can't find a way to live with it as I am suffering every day all the time. Acupuncture is my last hope to calm down the nerve. If that doesn't help then I will try nerve blocks and after that is only left killing the nerve. Where is your ATN pain and do you have it 24/7?
I am so sorry to hear you are feeling like that, the pain really is terrible! If you really feel like life isn't worth living make an appointment to see your GP and tell them how low you are feeling. It may be that you need medication to help with feeling so low. Some people say that stress doesn't help TN. My heart really goes out to you. In the meantime have you got any family or close friends you can talk to? Don't be afraid to ask them for support, as I'm sure they would be only too willing to support you if they understood how low you feel. Look after yourself Donna x
Louisa thank you for your kind words. My family is very supportive and they are with me all the time, but I am just so tired of this endless pain. I have tried to find positive stories about ATN cure, but I don't find them. It looks like I have got some horrible disease for life that has no cure. Thinking that I have to live with pain rest of my life scares me. I can't even get kids being on all these medicines.
Tegratol didn't work for me at all but I am at last finding that Gabapentin is working ..... Well to a point! It did take months with me increasing the dose. It may be worth looking at what other drugs are available to try. Good luck and keep your chin up x
hi! i do know how you feel trust me....i have a 12 year old son so i need to stick around 
mine started after a tumor which was wrapped all around my trigeminal nerve was removed. my neurosurgeon thinks the MVA either won't work or could make it worse for me. i have the atypical pain which is constant burning and pressure. i have found lyrica works more then any other drug. the weird part for me is when i wake up i don't have any pain...then by 11:00 am it starts to creep in and just gets worse as the day progresses. yoga or exercise truly make it better ....hard to get there sometimes when i'm feeling bad from the pain or the depression from the pain but exercise really is amazing. yoga is the best. keep trying different things different docs! ( ok ice cream actually stops it for a bit of all things best and also i drink ice water constantly which helps as well!- at least i'm super well hydrated!!! i live in LA so will at least make an appt with a doc here who does the MVA and see what he has to say....so scary tho to know surgery may make it worse. from the studies i've read MVA doesnt seem to work on my type. There is another doc i'm going to meet with soon. he supposedly does other injections that supposedly have worked. he's been referred to me by two different people but he doesn't take insurance so have been delaying that. good luck and i will keep you posted!
xo
Hi dona40912 sorry for late reply my pain alternates from left to right mostly left it surrounds left eye and side of nose along my cheek bone and deep ear pain the pressure like feeling cones and goes constantly all day it feels like a dentist literally has there hands in my mouth pushing and I'm wondering if I wasn't on 1600 mg tegretol if that pressure would present as the throbbing burning etc pain I had before meds were increased some nights I also take 40-50mg amitryptilline depending upon how bad a pain day I've had tonight I've got the burning sensitive skin feel to my neck on left side and left upper foot and last 3 toes v painful but I've just worked 12 and half hr shifts today and yesterday which were manic I'm a nurse (say no more v busy unit).
Anyone have weird limb twitching? ??from tegretol I'm on 1600 mg I mean like as though you are having your reflexes tested it's only with certain movements and mainly feet and legs it's not spasms more like twitching I've had mri brain which they found a type 1 chiari which means some of my brain tissue is bulging out of the lower portion into/closer to spinal cord my neurologist doesn't feel this is cause of atn but I'm not so sure 1 because of pressure feeling 2 because I've had other symptoms like dizziness neck/shoulder pain related to chiari which I didn't feel were appropriate to mention or were related to atn when I seen her was just wondering if you guys have no experience of the twitching sensations with the meds then if this chiari is the culprit of it all ????
The only twitching I've experienced is around my eye, but not in my limbs, mind you I felt so shot out on the Tegtatol that I'm not sure I will have noticed! I do think you need it checking out though!! Good luck
Well it's kinda leg restless legs but only brought on by touch of my feet or back of leg bit like as though someone is knocking you in the back of the leg I also noticed it when I was clapping my hands it felt as though it was vibrating up my arm really weird uncomfortable
Hi there! I know it's been some time since you wrote this, I usually end up pursuing through websites and blogs when my pain flares...what stood out to me was the way you described your pain, not there upon waking up, but getting worse as the day goes on, typically by lunch it's gotten pretty bad for me, and I have found that one of the only things that helps me is running. I've told doctors all of this for years now and they all look at me like I'm crazy. It's frustrating because I think so much is unknown about tn, especially atypical. I have started acupuncture recently, which led me to this board in the first place, and I am hoping it provides relief. I've had the mvd surgery done and the cyber knife as well, both of these not providing any relief. Maybe since you've posted last you've had some luck with something. It was so nice to read someone else describe the way their tn comes on like mine. Too often you can feel alone in this weird journey. Good luck to you!
Hi! I just got diagnosed with TN this past fall, I have had it since last summer, my symptoms are very similar to yours a burning that gets worse as the day progresses, it is horrible by lunch. My neurologist thinks that this all started from Migraines, all of my scans have been clear so that is good. Depression has been an issue for me too, and i have three young children. I have had some relief with tegretol, neurontin, and nortryptilline but I have had extreme exaustion and cognitive side effects; borderline dementia. Recently my neurologist did botox injections, she seems to think that this is going to solve my illness. I am curious what MVD surgery is, my MD says gamma knife is next if botox doesnt work. I am willing to try anything at this point. Acupuncture is interesting, and running? Doesnt the heat from the physical exercise make your TN worse?
hey sorry for delay in responding! it is weird what makes it feel better! i find that if i drink cold beverages all the time it helps! smoothings and even a small bowl of ice cream...no idea why that works but suddenly have started eating a bit of ice cream as that hels in the evening! but yes, running or walking or just being active outside seems to help! if i'm outside doing yard work i will notice when i come in that i feel better! i think anything that decreases stress helps as well! yoga/working out...not sure what i even posted before so maybe i already said all of this! but it is nice to wake up in the morning and NOT have the pain! i didn't have too much luck with accupuncture...even my accupucturist who is also an MD said he didn't think accupuncture or pressure injections would help. i like his honesty and the fact that he tried tho! another thing to cross off my list. i do try to get as much exercise during the day then go to sleep as early as i can. not always practical b/w work and life! pls keep in touch and let me know what you find that works! or helps ! or makes it worse! i have noticed lately it can get worse after eating food. hadn't really noticed that before. not sure why that would change now????
Yes it is great to get to reset in the morning, what a relief most of the time, but there are the "flares" that seem to carry over into the next day sometimes, and I'm still trying to figure out what triggers that. Just like you with eating, why did theat change all of a sudden, what is really going on that makes things worse??? Have you ever gotten red or flushed when you're in a bad pain level? I started noticing that a few years ago, my pain management specialist told me it was a response to the pain, but I'm still not so sure about that, curious if that ever happens to anyone else. I like the exercise and physical activity for many reasons, obviously most importantly it is a pain reliever the majority of the time, and as you said, a stress reliever too and it can be a welcome distraction. I try to be as busy as possible with activities and then I too go to bed early, I'm kinda teased about it by my friends and husband, but if I'm out late, and late to me is 8:00, my pain just build s and builds. Early bedtimes for me! My kids have gotten used to me, and my husband is a big help but no one really understands this life, living with the pain, except someone else suffering through it. Stay strong, keep in touch, and I'll keep posting...by the way, I hesitate to post this cause it is not a long term solution, but Sudafed, the real kind, at a dose of 120 will give me pain relief for about half the day and I go to that a couple times a month. My neurologist suggested that the effect was due to the blood vessels response to the medicine. Who knows...
Hi there! If I run in the summer, outside in the heat, yes it will make things worse...I'll end up with this feeling in my pain area like the inside of my head is going to implode. I too think mine started from migraines, or it was the TN starting out traditional like, with the flares here and there and it was three years before I got on tegretol and lyrica, which was blissful in the beginning, pain relief after so long!!! But the effects wore off and I did not like the side effects, especially from tegretol, so I weaned off of it after the cyber knife procedure. I'm still on lyrica, 175mg, and I have four children, three under the age of 8, I understand how hard it can be. Just dealing with the pain alone is almost too much to be a good mother, but then the side effects from some of those medications make things even worse. Try the halls or peppermints, halls work better or their is a new peppermint ice cube gum out now, it is my current go to for themporary pain relief, I did a grocery trip with the kids a bit ago, almost two hours, and chewed two pieces the entire time dropping my pain down to a manageable 2. Good luck!!!
I wouldn't waste my time or money on acupuncture. Acupuncture has been scientifically proven, repeatedly, to have no medical benefits of any kind. It would be nice if there was an easy way around the pain, but there isn't. The only proven treatments are medication (pharmaceuticals, not "natural"
, and several surgical procedures of varying invasiveness.