I think I have atypical TN, with all branches of the nerve affected. Right half of my face feels alternately "sunburned" "frozen" burning, numb, stabbing, or just fine (for short periods) It is almost always present in some form. The pain location can be all the nerves, or just parts of nerves, for instance sometimes I feel like the right half of my tongue has been bitten (not) or that the right nostril is burning, or ...
However I also have nerve pain down my right arm to the fingers and nerve pain under my right shoulder blade and into the right ribs. These pains are not as constant and not as distracting (being "more distant" from "me") but have the same qualities as the nerve pain in my face.
I've had this for two years, and have been to numerous docs, none of whom have offered a diagnosis, but have offered various ineffective treatments! List of did not work: Neurontin, lyrica, some other similar drug, trigger point injections, facet joint injections, TMJ physical therapy (somewhat helpful, but not complete relief). Chiropractic can relieve the worst of the facial pain, sometimes.
So, I guess I"m trying to find others who also have pain in non facial nerves. I am trying to self-diagnose (having gotten nowhere with doctors).
My latest thought is that I may have had shingles without a rash and developed post-herpetic neuralgia, or MS.
hi there I have ATN as well going on 3 years now. My face felt alot the same like frozen/numb but i can feel touch had crushing pain in my nose on the side and temples. Had alot of burning in my face. i have twinges of pain in my arm or hands every once in a while have even felt it twinge in my legs before more scary then painful cuz of the placement but I figure obviously my nerves are messed up its guna affect my entire body from time to time. I intially tried tegretol and neurontin which actually put me in more pain. Did alot of chiro appts but never really helped. I am now on Nortriptyline which is a tricylic anti-depressant which is best to treat ATN vs a anti-sez med. I take 75mg a day It has really saved me. If you have any questions feel free to friend and message me.
Hi jstagrl29 -- When I see my new neurologist I'm going to ask him about a tricycyclic low dose, and about shingles.
It's good to hear (though I'm sorry you have the pain) someone who has the odd assortment of pain sensations. I find myself thinking -- "What is this sensation?" Is it burning or freezing? Or biting? Or bruised? I swear all I can tell sometimes is that is feels wrong -- but I can't really put a label on it. Yesterday, I had almost no pain - and then last night I found myself taking an emergency oxycodone, and still waking up in the middle of the night because the pillow is burning my face.
I do get scared when I think about what it might be -- I still am not diagnosed. And I definitely got upset when I had the burning wire sensation in my leg a couple of weeks ago -- just for an hour, but omg, I started projecting doom over that. Fortunately, it hasn't been back.
Hi Karen! I have had sharp,shooting,stabbing pain down my shoulder to my hand. Sometimes it is only several fingers. I have had it in my foot as well.I actually thought that I had stepped on a nail at one time! Drugs did not help me and so I started taking Homeopathic medicines which have helped a lot! They are affordable and no side effects and it is a comfort to have ready access to things that really help. These are the main ones I am taking now-Swanson earache relief,Swanson nerve pain relief,swanson migraine relief,Hylands Hypericum Perf, and Boiron Sinusalia. I take them every day but I can skip a day here and there. Since I started Homeopathy I don't get nearly the amount of pain that I used to. I pretty much have things covered with these things! I hope this is helpful and that you can soon be feeling better!
Thanks Erin -- my pcp uses Homeopathic, and I will also check these out the next time I"m in Whole Foods.
erin said:
Hi Karen! I have had sharp,shooting,stabbing pain down my shoulder to my hand. Sometimes it is only several fingers. I have had it in my foot as well.I actually thought that I had stepped on a nail at one time! Drugs did not help me and so I started taking Homeopathic medicines which have helped a lot! They are affordable and no side effects and it is a comfort to have ready access to things that really help. These are the main ones I am taking now-Swanson earache relief,Swanson nerve pain relief,swanson migraine relief,Hylands Hypericum Perf, and Boiron Sinusalia. I take them every day but I can skip a day here and there. Since I started Homeopathy I don't get nearly the amount of pain that I used to. I pretty much have things covered with these things! I hope this is helpful and that you can soon be feeling better!
Yes! I have bulging disc at C5-C6 and share these symptoms with you. The distribution of pain from that disc is over those areas. Check out the diagram I attached
Yay! I love visual aids, esp. the ones we get on here. I have bulging disc at either C5-C6 or C6-C7. Looking at your visual, based on the nerve pain in my hand, I suspect it is the latter but I will have to get up to check my doctor's notes to be sure.
Karen, I have pain from under my left ear (tn side) down my neck and down my left arm. In fact, that pain started very close to the time I was diagnosed with TN and despite telling several doctors about it, no one other than a chiro tried to treat it. The chiro made everything much worse as he was pressing on my carotid/massaging down the jawline with pressure. I used to go home and pass out. After a couple of times of that, the last time feeling light headed and dizzy I found my cardiologist who ran some tests on me. My u/s showed a crooked carotid artery. How all this ties in together, I don't know but I do share it as it helps me to hear other's stories.
justjane37 said:
Yes! I have bulging disc at C5-C6 and share these symptoms with you. The distribution of pain from that disc is over those areas. Check out the diagram I attached
I am on Nortriptyline and it has helped with my ATN quite a bit, especially the teeth pain. It doesn't touch my eye pain though. Thanks for posting this. I currently have nothing that helps.
Karen said:
I found a recent study on the use of a combination of morphine and nortiriptilyne for chronic neuropathic pain.
I thought I'd share it here, just in case someone might find it helpful.
