Atypical trigeminal neuralgia and acupuncture

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

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 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!!!

Hi dona  sorry for your pain with this horrible condition, i to suffer from atn , 7 months now both sides constant pain all over my face gums tounge even ears , been in medication that did worse now on supplement and natural treatment that help abit , iam 32 and this has sucked my life out of me , just wondering how are you doing had anything help ? Hope you doing good 🙏 are you in the uk , iam from london it would be to speak to someone i do feel lonely with all if this pain 

Hi i have been diagnosed with TN today, after starting with pain last month. I think its ATN as the pain is constant in one side, a burning ache around my ear, through my jaw and to my temple. It sends a shooting pain through my teeth now and again, my gums burn and i would swear i had fum infection (all clear from dentists after 27 visits in one month) i have major depression, i honestly dont want to live through this. Myself and my daughter have moved back into my Mams as its left me unable to care for her. I just dont know where to turn. Im 25 and face a life of this.

Hi my symtoms are the same as yours.I havr had this pain gor 2 years.Constant visits to g.p.I finally got refered to a nerologist who said its t.n. I was put on tregretol and the side effects was horrendous i couldnt even work so i weaned of them and my next apointment isnt for 2 months 😔over the last two years ive paid for accuputure, massagers and craniel therapy with no success

Hi I’m sorry to hear of your pain, i am going through the same. Tried dealing with it myself for 6 weeks then gave in and went to doctor who had given me Tegretol . I also have a 5 year old and 2 year old and feel absolutely useless during severe attacks!! I find if I manage the medication well I can stay pain free , sometimes just a niggle . However I have to make sure I stay on top of the meds as if I don’t the attacks are horrible!! I am starting acupuncture tonight, will let you know how I get on, I am hoping and praying it makes some difference . 

Hi dona 

Sorry you have ATN , iam 32 just today haveing a horrible pain on my bday i had a head injury damaged the trigeminal  nerve  , was diagnosed with ATN , this all happend 11 months ago , havent tried any pain meds as yet its all new to me , only tried 10mg of amatripline but doesnt help , 

How are you copeing ? Any treatment or meds that help ?

Thank you , hope you are feeling better 

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