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I have trigeminal neuropathy (not neuralgia) which has totally changed my life. Until my dr. put me on Cymbalta, the burning pain in my upper back teeth was intolerable. The only thing which helped was Vicodan. I have to work and am fortunate it doesn't put me to sleep but not something I want to use everyday.
This discussion is for others like me to give emotional support to each other and/or share what has helped or not helped others.
Surgery Chronic pain Meningitis Anxiety Tegretol Stress Gabapentin Fractures Fever Diabetes Anemia Constipation Osteomyelitis Neurontin Ketoprofen Diarrhea Cerebral palsy Klonopin Burns Pentoxifylline Vicodin Morphine Topamax Carbamazepine Stent Genital herpes Folic acid Nortriptyline Zoloft Trileptal Ativan Coumadin Hormone therapy Sweating Oxycontin Synthroid Pain Memory Lyrica Oxcarbazepine Mental health Depression Pregabalin Metformin Acyclovir Trigeminal neuralgia Imitrex Percocet
i had microvascular decompression(DVD) surgery twice. first time for glossopharyngeal neuralgia (9th cranial nerve) and second DVD for trigeminal nerve and redo oc ninth nerve. both were performed in pittsburgh. first at upmc and second at alleghenny general.
I have been suffering for the past 2 years with atypical
trigeminal neuropathy. I have tried every medication possible that is suppose to alleviate the pain and burning, but all to no avail. I have seen over 15 different doctors, but no one has been able to help me. I have been to Columbia Medical Center in New York as well as Univ. of Medicine and Dentistry in Newark, NJ. I have become disabled from the 24/7 pain. I have not had a pain free day in 2 years. I take percocet and morphine daily, but I still am in the most unbearable pain. I have tried cortisone injections in my mouth, but that did absolutely nothing. I only leave the house to go to the doctor. My medications cause dizziness,drowsiness, and constipation. I feel like I have no quality of life, and do not know how much longer I can live like this. I read about Botox injections having some success, but my insurance denied coverage for it. I am willing to pay for the injections as a last resort, but need to find a doctor in New Jersey who gives Botox for Trigeminal neuropathy. Does anyone know of such a doctor?
I applied for disability, but was denied because Trigeminal neuropathy is not on their so called list of eligible diseases. If only these people making these decisions were aware of how disabling TN is. I have found that healthcare professionals are not very aware of the severity of this disease, and they do not know how to help us. Please if anyone knows of a good doctor that gives botox for TN please let me know their name. The hope of trying botox is the only thing keeping me going. If I can't try the botox, I feel like I can't go on. This all started after, I had a tooth pulled.
hi,
i have bilateral facial pain in all 3 branches. this happened last august, very suddenly over the course of a week. of course, 2 thin slice MRI/MRAs, blood work, Ct scan and everything came back normal. no vessel compressions.
i have no diagnosis because all of my boston doctors are dumbfounded. nobody can explain how i have this facial pain with no injury, illness, trauma, or dental work. no problems with sinuses or teeth. no shingles. no MS. no auto immune disease, blah blah blah.
my pain is achy in my cheeks, sometimes stabbing. the nerves in my forehead and scalp ache and feel strange when i tap on them. my teeth ache as well.
i do not have numbness. not sure if anyone who has trigeminal neuropathy usually has numbness?
i am on nortriptyline 50 mg and lyrica 150mg. some times the pain is low, sometimes it is high.
not sure what is happening to me.
I am currently 39 years of age and until just after my 37th birthday I was free from any type of nerve pain. In March 2007, I caught a viral infection which essentially after a week attacked my right Trigeminal nerve.
Of course, at the time I had no idea what was happening and was very scared when the right side of my face became increasingly numb. This followed with severe pain down the complete right side of my face. This included my scalp, jaw, teeth and right side of my tongue (even extending down my throat). This was (and still is constant i.e. 24/7). After many visits to the doctor I was referred to a neurologist at one of the hospitals nearby to me.
The neurologist confirmed that all my symptoms were typical of Trigeminal Neuropathy. I had an ‘MRI’ which confirmed this. All three branches of the nerves were damaged. For about three months it was agony for me with hardly any sleep.
Various tablets were tried. Tegretol just knocked me for six – I felt sick and extremely tired and thus had to stop them. I tried Amitryptiline and eventually got a tablet which started to help. It was Lyrica (Pregabalin). I had to keep increasing the dose until I reached the maximum you can take a day which is 600mg. After about 4 months my scalp felt better giving me the hope that one of the branches had healed. However the other two which are covering my forehead, eye, nose, cheek, tongue, jaw, teeth etc. are still bad. I was given another ‘MRI’ about 8 months later and was only told that the virus had gone.
However, in Mid June this year, I was given a much better diagnosis from a neurosurgeon at the hospital, this visit was advised from my ‘Pain Management’ doctor as he suggested surgical procedure.
The neurosurgeon told me that the first MRI showed that due to the virus, the nerve had enlarged considerably. On the second MRI it had shrunk which meant that some of the neural fibres had gone on the nerve. He told me the fact that it is now 2.25 years since it started that it was unlikely that it was going to heal as neural fibres grow back at a rate of 1 inch per month. He told me that it was definitely Trigeminal Neuropathy as there were no external sources i.e blood vessels giving pressure on the nerve.
His advise was that there were only two things he could do which weren’t cures but pain relief.
One was electrolysis of the brain i.e. sticking probes on the brain and trying to excite the nerve. He was not a fan of this procedure as he didn’t see much success in it.
However, he recommended fitting a type of ‘Shunt Catheter’ under the skin of my abdomine which would periodically release (or pump) a form of Morphine to my spine to relieve the pain from my face.
I do not know if any of you guys have heard of this procedure but would be interested in your feedback. I am on a waiting list to have a trial needle injected into my spine to see how I feel.
I have to say that although I still suffer, I have it more under control now with a mix of pregabalin and Cymbalta. I have days where the symptoms are not so bad and then, particularly if I’m stressed quite bad. Pain estimate between 1-10 for me = 4 – 7 (with medication).
Thanks!
Facefacts- also what type of symptoms do you have in your pain?....Is it burning, stabbing, crushing etc. etc.? and what do you feel the Botox works the most on?
Everyone who I've seen that had a neurectomy of the nerve have had temporary relief (about 6 months)...then what starts to happen is the nerve tries to regenerate and it becames a nightmare....they get phantom pain and most get Anasthesia Delorosa (numb, burning pain) that there is NO CURE for...not even medication...nothing....If you want to "try" something I recommend looking into the Nerve Graft but even the that has very minimal outcome and really should ony be done if you have a neuroma...like I did...they cut the damaged part of my mental nerve out with the neuroma and put the graft in....didnt work and neuroma came back in year (it's on the MRI)......A last resort would be to look into Motor Cortex Stimulation....don't do Gamma Knife either I've seen so many people in so much pain from that...the girl on this sight was lucky very lucky.....
HI facefacts
I am so with you on getting them. I unfortunatley have insurance in Mexico which does not cover procedures in US so as you and everyone knows things get pretty expensive. Anyways fight dont give u especially if you found something that works. I have been reading your posts and wanted to double check with you you had osteomelytis and because of the jaw removement it caused your neuropathy.
I think i have exactly that, i had dental surgery gone bad and just last week got a biopsy and found dead tissue still waiting fir results. Anyway it would really help to be able to hear from you. Hope you win your battle
Hi sydney2319
What type of neuroma did you have? did you have the neurectomy, why do you not recommend it? I read a little about it kind of scary. Sorry to ask so many questions but i guess you understand. Dont know anything about the botox though you could probably call another dr to ask his opinion.
Thanks and good luck and hope everyone feels better
My psychologist is Dr. Nancy Just of Advanced Psychology Services in Ridgewood at 1 Prospect Street, I don't have her phone number handy but I'm sure you can google her name and find it.
Interesting how different things work for different people, isn't it?
Good luck to all!
Thanks for the info...I too had a Sural Nerve graft (nerve taken from foot) to remove a neuroma last may.....it didn't really work the pain and the neuroma came back...this is why I need Botox injections...My Doctor was Dr. Peter Constantino in Manhatten (one of the best in the world).....and too top it off I now have pain in my foot!..but I can deal with that....Just make sure you do alot of research..and whatever you do...Do NOT do a neurectomy!...Anyway 2 units is so small...He does 2 units in everywhere?...I felt immediate pain relief yesterday....My Dr. did do a nerve block first but when it wore of I still had pain relief...but now I don't feel anything just sore from shots...is that normal?.....Did the Botox ever make your face droop as a side effect?..It's weird my Dr. used less Botox (12 units) on that my Spa Doctor uses on the wrinkle on my forehead (20 units)...Are you sure you don't mean 2 vials? There 100 units in each vial.....I just wanna make sure my doc is giving the correct amount...it's day 2 and I have little relief...is it gonna get more...and was does your relief feel like? Is it numbish? Thanks, for your help :)
i saw that dr. and he gave me a stent as well -- did nothing except make me want to spit from the taste - in fact for me the stent being a hard piece of plastic did not feel good sitting on the surgical site - remember, i had part of my jawbone removed.
all of the medications for neuropathy have also not worked for me. cymbalta was not a good choice for me at all and made me completely emotionless. i could NOT cry or be happy - nothing.
my insurance company after 2 years is now denying coverage for the botox - the ONLY thing that helps me. I am fighting them hard and i will win.. or I'll change insurance companies ! can i say bastards? it's all about the mighty buck!
YES _ i felt the botox immediately, though no pain relief for 6 days - i also get the injections the same place on the other side of my face for symmetry -- i get 2 units and the doc injects all along the trigeminal nerve including into my scalp and down the back of my head. i get injections into my temporal whatever.. and my forehead for migraines. it is a miracle to me -- and the only way i can go on!
i did just find a doctor that REPLACES the damaged nerve -- scary, yeah - but who knows. IF they can pinpoint the nerve and damage they can replace it with one from somewhere in your body or a cadavers.. and so far they've done a LOT of these surgeries, though a couple in the face, and all have been successful.
i see him in a couple of weeks and will keep you posted.!!
if you are looking for a pain psycologist search for one online - also look into wall township - believe there is a good one there. you want somebody that will do feedback with you too - oh and you want to REALLY like them so do shop around !!
off to write a letter to the damn insurance company. so aggravated.. how dare they think they can deny after 2 years? !
anybody wanna throw in a go get 'em for me ;)
be well!
What's your PAIN Pscychologist full name...she's right near me and I desperately need one...and her phone number if you don't mind...you can email me at sydney2319@aol.com
Hey I just got Botox yesterday for trigeminal neuropathic pain in the right mental nerve (have neuroma)....felt immediate relief, however today I am VERY SORE and mouth feels weird...Did you get sore from the injections?...and how many units does your doctor shoot into you...he only did a total of 12 units in 3 places (by ear,in jaw muscle and right into muscle over the mental foramen).....I think he should have put more in...cause it feels like it only partially worked now...however, he was afraid he didn't want to put too much in because he did not know how much would make my face droop...plus he said that the maximum affect will be with in 48 to 72 hours....you said it took yours 6 days.....did you feel anything when he just did it?...cause I did...also how many units does he inject in you....please help....
Thank you, mine was upper molar #3 and I already e-mailed Dr. Heir. He responded and I am going to talk to him tomorrow. I have already been to someone in Philadelphia who is associated with them years ago but he never offered me the stent. He wanted to put me on Topomax. I am not going to get my hopes up yet but thanks for all your help.
I will keep you posted.
Hi, it was upper right canine, #11. No side effects from Cymbalta yet. If you need a dentist who specializes in oral facial pain and you are not in the NY-NJ area, I suggest checking out American Academy of Orofacial Pain website and entering your state or country and see who is closest to you:
http://www.aaop.org/index.asp?Type=B_BASIC&SEC={16DCC896-A8EE-4207-A98A-1D3 BD2DB50AE}
If you want to talk to my dentist, Dr. Gary Heir, he can be reached at heirgm@umdnj.edu
Good luck!
Hi Childof60’s. So glad to hear you are doing good. Just wondering what tooth # you had your root canal. Was it an upper or lower if you don’t mind me asking. Mine was the upper. How is the Cymbalta, any side effects yet? I never tried that but it was offered. I wonder if a stent like that would help me. I am so far advanced in this neuropathy. I might e-mail your doctor and ask. Thanks for replying and giving us all this information. Keep us posted.
Hi gw and all who are interested,
A stent is a plastic that is held against the gum where the greatest amount of pain is. It was created using a mold of my mouth. I take it out and put topical medication in it 4-6 times a day, as needed. In an earlier post I listed the ingredients in my topical medication. One of the ingredients is also called "Ora-Base" which is a "glue" which holds the stent firmly in place until I decide to remove it.
Here's a picture of an oral stent I found online:
http://jada.ada.org/cgi/content/full/131/2/184/F2
In the picture, it looks white. In my case, the stent is "gum" colored and the medication is clear, so it looks natural, and no one even knows I have a stent.
I remove the stent at night.
The only downside is that the medication tastes icky. I suck on menthol cough drops after changing the medication to mask the taste.
I hope this is helpful.
hi childof60
that is great news hopefully things will keep on etting better. I just wanted to know what exactly a stent was is it something you put in your mouth or how does it work.
please let me know thanks for your updates
hi, updating that things are going VERY well with using the stent with topical medicationand the cymbalta for systematic neuropathic pain relief. My average pain level is 2, very manageable, and sometimes even a 1. highest it has been since this system was instituted has been maybe a 4. G-d bless my dentist, Dr. Gary Heir of UMDNJ/Newark though I see him in his private office in Bayonne NJ. I'm doing so well with this regimen I will only need to return to him in 3 months for a check up. Now I also see a pain psychologist, Dr. Nancy Just in Ridgewood NJ,, on a weekly basis. She is not inexpensive but she is readying me to deal with the real life impact pain has on my ability to return to the life I thought I could not enjoy due to pain. In a few weeks I will return to work and be the same me I always was . That's a long way from the woman who had suicidal thoughts due to what I believed to be my inability to deal with lifelong pain in a constructive way.
That's it for now! Good luck to all!
Hi child of 60s. How are you making out with the stent. No one ever offered this to me, but I do remember reading about it a long time ago. They said my pain was central. Hope you make out good with it. Keep us posted. I
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