I have been reading for a while, and then I finally created an account, and have continued to read your experiences avidly. I started to feel like we were like the alien abduction community, because we have our own websites, we experience something and you think no one believes you, especially if you’re like me and continue going about your personal and work life like nothing’s wrong. fake it til you make it, right?
I SWEAR it all started with a root canal that got infected. for a while I was on hydrocodone and antibiotics and I felt better. then I would be in pain again, so I got more antiobiotics and felt better, but the pain came back again. I finally got to the point where I just thought I’d “sack up” and tough it out for a year, because that’s when the endodontist said to come back for a checkup.
during this time I told my dentist about some of my problems: tooth pain, shooting pains through my brain like lightning, a constant gnawing on the left side of my face, horrible eye pain, constant pain in my eyebrow ridge, AND A PERPETUAL ICE PICK THROUGH MY EYEBROW. oh. I can’t pull on my beard or my eye hearts. how is that possible! he made me a bite guard so I lived with that for a while.
after a few years of this I got exhausted and went to an ENT as suggested by my endo after a year, since I also had tinnitus. the audiologist found no problems in my ears. the ENT found no sinus issues nor any reason for tinnitus. I had no idea what else to do.
I had my eyes checked just in case. nothing.
I finally told myself that if I had a headache, maybe I should see a neurologist. so I did and after my history, he suggested I go to a dental school. I was flabbergasted. he did give me carbamazepine which helped with lightning strikes to my head so I was thankful for that. finally when my script was about to expire and I was about to give up cuz I didn’t get checked at the dental school, I opted instead for a dental surgeon. I asked him to please just pull my tooth that started it all. just take it out. I don’t care!
he was an ethical dental surgeon, so he put numbing shots to see if my pain went away. nope. so he tried another one just in case I would react differently. nope. he said he would take my money if I wanted to, but my pain would still be there. I just sat in the patient chair crying. how awkward!
I continued with the neuro who tried horizant and equetro on me, basically name brand extended strength versions of gabapentin and carbamazepine. I leveled off at a high pain level but anything was something. the neuro finally basically told me, well, we’ve done all we can!
I was livid.
so I went to a new neuro and told her I AM doctor shopping and told her my saga and how I felt the semi-retired current neuro just wasn’t what I wanted in a doctor. she suggested maybe SPG? and botox. I am on my second round of botox and it has helped a good bit on the external pain. the eye pain created stress in my forehead so I also had a continuous pain on/behind/around my eye.
BOY HOWDY am I a convert to botox for migraines. no I don’t work for botox =]
except I can’t move the left side of my face or make spock eyes any more hahaha.
I have noticed I don’t reach for the aspercream as much as I used to.
anything for the cause.
I still have the constant eye pain and I know how people have argued against LDN (low dose naltrexone) but I’ll try anything at this point. I am also going to try the lidocaine spray. I also sometimes take indomethacin as a hail mary drug.
Anyway, I thought it was high time I tell my story in case it could ever help anybody so they don’t have to go through eleventeen doctors before a diagnosis. (yes I also had CT scans and MRIs with nothing there, I forgot to say). I still want to pull all my teeth out, but at least I know that that would be a waste of money now.
peace, y’all.
Hi Austin, welcome, thanks for sharing your story–you’ve been through a lot! I can relate to some of your story, especially sitting in the dental chair crying, because nothing is wrong (that they can diagnose).
I am a HUGE fan of lidocaine patch! Started using it about a year ago and it changed my life. I slap a strip on along the nerve branch that feels even remotely like it’s going to flare/fire and it seems to largely stop the pain. I started using it during a 10 month flare of constant pain and it helped, I never stopped using it.
Hi, I live in the Austin area also and have been suffering from a form of TN for most of my life. It initially started with an extraction of an impacted wisdom tooth about 30 years ago, that was suppose to relieve my pain. It did nothing for the pain. I was told my problem was my bite and from there I went from dentist to dentist having my teeth ground down. Finally there was not enough of my teeth left to grind on anymore and I was sent to a prosthodontist who said that I needed every tooth in my mouth capped so he could fix what the dentists had done. I would also need a night guard. This seemed to help for a while, I just had a dull ache. Over time I ended up having all my teeth on my right bottom side extracted. The oral surgeon that removed my last tooth said that he thought I needed to see a neurologist.
Finally, someone put a name on my pain and I started down of long road of trying one medication after another. I finally found Lyrica which made the pain tolerable. Then in Feb. of 2016 I had skin cancer removed from my face in the area just under my eye toward my nose. Within days my eye felt as if it had grit in it. My hair was crawling, my skin was hypersensitive, my upper lip was numb, I had no feeling in my teeth and my tongue and pallet felt as if they are scalded. I was sent to a pain doctor who tried a nerve block, surgically implanted a neuro-stimulator (trial) and a Ketemine IV. Nothing touched the pain. He discharged me because he was out of options.
Now I am seeing a neurointerventional radiologist who has tried a nerve block, a radiofrequency ablation and a balloon compression rizotomy. I am really no better than I was. Now the numb, pins and needles pain pretty much encompasses the whole right side of my face and I feel like it is frozen. My eye is the worse, it still feels as if there is foreign matter in my eye and it is almost impossible to ignore. Please let me know if you find anyone or anything that helps.
Peace be with you.
Hi, everyone. I’m new to the group and live in Chicago. I’ve been through much of what you all have: dental work; had two teeth pulled, thinking it would help; 15 different specialists with nearly as many diagnoses. The final ones were Trigeminal Autonomic Cephalgia and Atypical Trigeminal Neuralgia. I’ve received cervical epidurals, facet joint epidurals and massage because of longstanding neck arthritis and herniations, thinking that my neck might be causing the pain. Tried all the meds, but had memory problems with any of the antiepileptics. No relief. Right now, I take Effexor, Verapamil, Celebrex and Baclofen.
Finally, a neurologist started giving me botox injections, which helped for a while. But, then suddenly the pain recurred. Pain is on the entire right side of my head and neck, ear, jaw, eye (stabbing pain), nose, cheek, temporal area. You get it, right??? Well, after dealing with this for three years, my massage therapist convinced me to try acupuncture. I wasn’t afraid of acupuncture, I just didn’t think it would help. Well, drum roll*********** Guess what? The chiropractor who did the acupuncture said that my symptoms could be caused by my atlas being way off center on C1. Then she pressed down on a spot and whew! it triggered all my symptoms. She also explained that my fractured clavicle never healed properly, which contributes to my neck problems. So, with one little adjustment, 85% of my symptoms disappeared. It was like a miracle. Since then, I’ve been doing tiny little neck exercises (bringing my head down a little bit) and resting my head when I get tired. But, the vast majority of my head, neck and shoulder pain is gone.
I hope that those of you who haven’t tried an experienced chiropractor will do so. One time, an oral surgeon who yanked on my head trying to pull a molar caused my ear crystals to unsettle, resulting in severe dizziness. So, I can believe that similar exertions from a dentist could knock one’s atlas off center. My heart goes out to all of you who have endured this awful pain. It’s so fatiguing and depressing. Keep trying.: )
You poor soul, egoist… Its a sad thing when you go to a dentist who does work and causes so much damage and nearly denies doing it, but you are left with the pain and Doctors who appear to help by sending you for spiels of tests with negative outcomes, but the pain is still there. Its nerve pain and most times nerve pain can not be picked up, its a feel pain. My mother has had this for 30 years and now 8 of her cranial nerves are affected, so when she has a bout of pain which can last seconds to years she is in screamable pain. Being a nurse I quit my job to take care of her and experimented with her pills. One one stops working I found to switch to another e.g. tegretol to epilim, and I found, after alot of research two products that stopped her pain in their tracks. GABA and Hi Vita, the GABA is NOT gabapentin, that is a hellish medication, this GABA is natural and doesnt change your mental acuity, but enhances the epilim, and the Hi Vita seems so harmless and nothingish, but Ive found that high end nutirition is the key to pain relief, after trying all the opiods and other pain relieve, it DOES NOT work at all. But the HiVita is a miracle for her, when she begins to feel background pain, I up the HiVita and the pain goes completely. Its made of vitamins, minerals, amino acids and herbs, it was created by a chiropractor when he worked out that a lot of pain is caused by lack of nutrients and I can see he was right. How wonderful if all the drug companies didn’t prosper from people in pain, instead, natural vitamins win the game. Diet alone is not good enough, you need extra, hence the Hi Vita. Its made in Australia. Dont get your teeth out. Mum got 4 pulled to no avail. She is presently 94years old and pain free for 7 months now on this GABA , Epilim and Hi Vita. Good luck and God Bless.
Nancy Sorry for all your pain, I feel you. I have suffering with ATN for nine years and lately I started having some of the same syntoms you describe. I did some research and found something called Glossopharyngeal neuralgia (GPN) which seems to be a cousin to ATN. GPN affects the ninth cranial nerve and causes pain in tongue, throat, ear etc…I am going to doctor next week to find out what is causing all my new pain.
Judith, What type of pain were you experiencing before these new symptoms arrived? This pain that I am have encompasses the whole right side of my head and came on slowly over the course of a week. My neurologist believes that I have had a virus of the brain stem (shingles) and, though I no longer have the virus, I have the neuralgia that it has left behind. Bells palsy, which also affects the facial nerves, is also caused by a virus. Every procedure they have tried has left me worse off. Everything on the right side burns constantly, including the inside of my mouth, tongue and lips. This is such a terrible disease, I am so sorry that you have it too.
my Atypical Trigemental neuralgia pain was on my left side Pain in teeth, gum,cheek, nose eye lip and tongue This was stabbing, burning shock like pain but only on left side. I had MVD in 2012 the pain was not constant for awhile but then comes back especially when stressed. The new pain started after I got a new partial, actually the throat pain had already started, then came terrible burning on my tongue. and pain in my neck and ear. I would get choked so easily even on my salaiva and the inside of my throat felt like it had been cut with razor blade. The pain would be acute and then go away. I am going ot doctor the 25th and I hope to find out if this is just a part of ATN or something different. I have just about lost all joy in living except for my daughter and grandkids. I have gritted my teeth since I was a child. I was wondering if others had this problem and maybe it could be a cause of so much pain now.