Trigeminal NEUROPATHY

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.

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Hi,
I was wandering if you have ever consulted with a neurosurgen concerning your problem. I have severe Spastic Cerebral Palsy, am 49. I also have an ITB Pump, made by Medtronic. My neurosurgeon did my surgery for my pump implant and also for my Cervical fusion. I know he has treated others with Trigeminal Neuropathy successfuly with surgery.
Best Wishes,
Pat :)

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Hi Pat,

I know EXACTLY what you're going through. I had trigeminal NEURALGIA...in my teeth and I have poly neuropathy all over my body...it's headed into my autonomic system now. Have you seen a neuro that specializes in trigeminal disorders???? There is a GREAT website for the trigeminal neuralgia association (which also has alot of valuable info on t. neuropathy like you have). They lead me to a surgeon who performed a MVD and got rid of the pain...on that side. I still have a touch of neuropathy though in teeth. I'm so sorry. If I can be of help, please feel free to email me at jeanienewell@bellsouth.net. I know the pain from an attack is something that can literally bring you to your knees. They are having alot of success with some new drugs out there. I couldn't tolerate the cymbalta so I see a pain specialist and we've found one that works through trial and error. Even though there is no cure, there are things that can be done...even with neuropathy.
Good luck....let me know if I can help...and check out the trigeminal neuralgia assn website. You'll be amazed at how helpful they can be.

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Hi, I had a traumatic injury (dental surgery which led to a horrific infection, osteomyelitis of the mandible) which is now trigeminal neuroPATHY... the ONLY thing that has worked for me (and i've done it all, pain meds, anti-depressant meds (including cymbalta), even had a stimlator implanted in my face) all to no avail. I have been getting botox injections directly into the sites of pain and along the trigeminal nerve. It has brought my pain level down from a 9 to a 2!!! i would NOT be here without them. That said, before I went they were talking about brain surgery and implanting a stimulator there... that's when I said.. but Botox works for migraines .. there is a 50/50 chance it will work and you need a TOP NEUROLOGIST who specializes in facial pain -- I am lucky, finally to be on the good 50%. Hope this helps somebody!

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i meant to sat maxilla, not mandible ;)

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I also have been diagnosed with trigeminal neuropathy. I have pain in my eye, cheek and jaw constanly the cold makes it worse. I am now afraid to go out side. eating really cold food makes it worse and talking alot makes it just ache terribly. I am on Cymbalta, lyrica 200 three times a day, and tegretol 600 two time a day, and ativan for anxiety as needed. and two days a week I get to have pain holidays and take vicoden. This is a new doc I am working with we are trying to find the right combo for me I also work but right now I am off work and also worry about how this will work. I am a RN and would not want me taking care of anyone in my family. I am slow, and tingly all over. I do think that the increase in lyrica and tegretol have helped. My doc did a rescue on me the other day shot licocaine in my face. You need to find a doc that is familar with facial pain. Keep in touch

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I, too, had it for 7 yrs! It finally went away. This waswhen they had no meds for it.Constant pain in my teeth for 7 yrs! I had two root canals to no avail.Now I have 6 caps across the front and my bottom teeth, once straight are now hopelessly crooked from lack of use. I feel for you.

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pepper, i am SO happy to hear that you are pain free! this is wonderful and amazing news. I am dancing for you, as singing hurts ;) How did you get trigeminal neuropathy - or was it neuralgia? My doctors have been telling me that 5-7 years from the dental injury and infection that it will probably go away, it's been 6 + years and it doesn't feel as if it is going away anytime soon. I had corrective restoration of my upper teeth as I had to have 1 extracted due to the osteomyelitis when they took some of my jaw bone, since then i needed 8 root canals. 2 are not healing so i went to see a top endo and he said they will heal within 2 years. I am SO tired of the TIME i feel i am losing. CONGRATS to you, Pepper! Do tell more about how you got it and how it went away.. it is so encouraging!

prayers for all of you,
facepain and face.your.pain

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Hello, I just joined and would like to add to this discussion. I have had Trigeminal Neuropath now for over 5 years. I had a history of bad sinus infections and some minor symptoms of the neuropathy (stabbing pain, numbness, and aching), which I thought was from the infections, and I ignored them. Then after a rathe hard and long business trip, the right side of my face became numb and I had a stabbing pain and it felt like something was trying to drill its way out of my right forehead. This continued for about 2 weeks, and I took a few days sick leave to see if it got better. It got worse! On a Sunday night it was so bad I couldn't sleep at all. The next day I tried to go to work, but the pain was the worst pain I had ever had. I ended up sitting in my recliner and all I could do was rock back and forward and curl up as much as I could. I could not escape the pain!!! My wife got scared and called an ambulance. In the emergency room they took one look at me and started me on an IV of pain medication. It took 5 hours of them pumping pain killers into me, before the pain got down to a 7 on the pain scale. They could give me no more pain killers, because it would affect my breathing! After that I consulted my normal doctor, then I don't know how many neurologist! I have tried almost every medicine available for this condition, with no help, except for opioids. I started on a fentynal patch and endured many days of throwing up as the dosage was increased, until it was a 100 mg patch. I tried trigger point injections, I had the trigeminal nerve base injected (verry painful,as they go in from the right jaw close to the ear, and you have to be awake), no help at all, I was going to try gamma knife, but because my pain is atypical, they wouldn't do it. I am on Long term disability, and I am on full Social Security disability. I became alergic to the patches, so now I take Morphine 100 mg 3 times a day. This lets me live at a 7 on the pain scale and still be able to function to a certain degree. Early this year I had the good fortune to be sent to a Pain Control class and one on one sessions with a doctor that taught me a ton of relaxation techniques and exercises which has helped me control my other disabilitys pain, so I am functioning at a higher level , I still have the Neuropathy pain at a 7, but the other pain is greatly reduced. I have also taken up several different arts and crafts. Working on these projects I can focus intently and drown out the outer world, and lets me block my pain a tiny bit more. Every bit of pain control is well worth it. I also attend a Chronic Pain group at my local V.A hospital. We discuss our situations, provide moral support, and help each other by talking about what pain control techniques work for us. We are led by a Mental Health Doctor who specializes in chronic pain. Each week he coves a new technique or we go over previous information to keep it fresh in our minds. If you have access to Pain Control specialist, I highly recommend giving it a chance. I in the past have also had Accupunture and Accupreasure. Unfortunately I was not able to continue do to the cost, and it is not coverred with my V.A. or Medicare. The only time I was pain free for more than 30 minutes was at one accupuncture session. It was not reproduced in tries afte that! I do not know where I would be without the pain control doctors, the control techniques, arts/crafts and the most important support of my fantastic wife. I feel I have been blessed to have so much support all around me. Please send an email if you think the things I have learned may help you!!!

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Has anyone had Botox injections to reduce pain for thier Trigeminal Neropathy? Please let me know, we are at the end of our rope.

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Kerry, I get botox injections -- read up to my posts above. they saved my life! it works!! but, you MUST see a top neurologist - they MUST know where the trigeminal nerve sites and I wish you the best of luck! Your doctor will need to write a letter to your insurance company that it is deemed medically necessary since they consider it experimental.. duh! the experiment worked with me! -- i was about to end everything because the pain was a 9 -- it is now a 2 and there are days i don't have any.. well, for moments. They wanted me to go for brain surgery and I said ya think I can try botox first! I wish you the best.. hang on to your rope.. it takes a bit for the injections to work and the more you go the better it gets (can ONLY get injections every 90 days or you can build immunobodies to it and it won't work any longer) - it takes 16-20 days from day of injections for them to start to work and only lasts 60 days.. BUT for me it starts to work within 6 days after injections and lasts up to 70-80 days. It's a MIRACLE! please please keep me/us posted. It is NOT Trigeminal Neuralgia.. it is NEUROPATHY -- 2 entirely different disorders... though the manifest and feel the same. HUGS!

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I was also going to try Botox injections, but my Neuropathy is considered ATYPICAL, the doctor would not do the injection because he could not be sure where to do the injection!!

I was also being considered for a Gamma Knife procedure, but was rejected by a Neurologist board, because again my pain is considered ATYPICAL!!!!!

They told me because I have sensitivity to light and noise my condidion can not be considered TYPICAL!!! I begged and pleaded, but they said the Gamma Knife has to have very specific targeting and if they got the wrong area I could have brain damage.

I also checked out a procedure that would do a Gacairian Ganglian block, but was told the success rate in only around 20% and the right side of my face would be numb for life afterwards. It was also going to be exteremely painfull!!!

As I stated earlier I have tried so many other things, I can't remember them all.

I, for the time being , can handle the pain at a 7 as long as it does not get into the high 8's to 10's. I don't like taking the morphine, but that is what is needed at this time. I know I must keep up with my pain control techniques to stay here also, if I don't the pain goes up quickly.

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Hi Kerry,

Did you decide to try the botox injections? My neurologist/pain management specialist discussed botox injections into the greater occipital nerve as a way to control my trigeminal neuropathy but then he noticed that I am on Coumadin and told me that patients on Coumadin are too risky for that procedure.

Another complication is that he told me that while Medicare will approve the cost of his services to administer the injections, they will not approve the cost of the vials of botox. Apparently Medicare is concerned that doctors will lie about the real need for botox and use it for cosmetic procedures. Each vial of botox is $500 and each injection uses 1/3 vial. Apparently injections into the area of the greater occipital nerve have an effect on the trigeminal nerve. He told me that that was a better approach to try first before injecting botox directly into the trigeminal nerve, although he performs both procedures.

I guess I could go off the Coumadin for a few days in advance of each injection but we haven't had to make that decision yet because the medications that I am now on appear to be working reasonably well. It took about four months before my current medications really kicked in and reduced the severity and frequency of my trigeminal attacks. Maybe that was because it took them more than two months of gradually increased dosages to get me to my current dosage: 2400mg/day of Neurontin (gabapentin) and 600mg/day of Trileptal (oxcarbazepine). I was on 375mg/day of Lyrica and 300mg/day of Topamax but once I reached the notorious Medicare Gap, those two drugs alone were going to cost me $796/month, so I asked my doctor to switch me to generics.

I am now free of pain for as long as two or three days straight and when I do have pain, it isn't nearly as intense as it was a year ago. Mostly what I have now is occasional pain in the upper right wisdom tooth but that's not nearly as intense as it used to be and I haven't had an attack on my tongue and the insides of my lower cheeks and lower lip in months. Also, the extreme pain radiating up to the top of my skull is rare now and the pain in the eye is very mild and infrequent. I have what you might call background pain all the time but it's at above a level 2 or 3 so I don't even notice it.

Besides the Neurontin and Trileptal, I take Percocet (10-325) every six hours as needed but then I can't drive my car.

You might want to ask your doctor if occipital nerve injections would be a good idea. Please post your experiences if you choose to get any of the botox injections.

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Correction: I meant to say that my background pain is about a level 2 or 3.

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I have recently discovered by doing a lot of research, following up on a strong suggestion by a dentist, that I have trigminal neuropathy (probably) or possibly neuralgia (not as likely). My pain stems from dental extractions on my lower right jaw, which led to more than a year of inflammation and infections, which has now progressed to neuropathy.

My neurologist sent me for an MRI two weeks ago and called in an Rx for Tegretol 100 mg at bedtime. I have taken it until today, when I started having hallucinations (flashing blue lights upon awakening or after closing my eyes for more than a few minutes). My present neurologist called me back and refused to prescribe anything as an alternative to Tegretol, saying that he thought I should probably check in with a mental health professional.

Meanwhile, I do have a limited supply of oxycontin that I use for my occasional migraines as an adjunct to Imitrex, so I am taking that and it is helping (more than 50% relief). I also have a pulling/contracted sensation and pain in my scalp. That wasn't helped at all by the Tegretol and neither was my upper and lower jaw, tongue, and eyebrow pain (classic trigeminal pathways).

I need help finding a really good neurologist for trigeminal neuropathy (probably that rather than neuralgia) in Missouri or adjacent. I can afford Botox if that is what will help. I can justify traveling further if there just really isn't anyone more local.

Thank you so much. I am already inspired by the stories I see here and feel for others who are similarly needing help.

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hi all -- so sorry to hear of your pain!

i want to really stress that there is a HUGE difference of neuropathy and neuralgia. Neuropathy usually comes from a traumatic injury to the nerve whereas Neuralgia comes from hereditary factors, MS, etc.

That said I have been diagnosed with ATYPICAL facial pain in the trigeminal nerve and I WAS approved for Botox injections. I get the injections along the nerve pathway -- 2 vials. Medicare pays the doctors fees but your secondary insurance, such as Aetna, Blue Cross, etc. *whatever you have* covers the medicine (botox) -- the DOCTOR needs to go through a process wherein he sends the info to Medicare who say no, not covered - this info is then sent to secondary insurance with a LETTER from Doc deeming it MEDICALLY NECESSARY and then you wait for approval. The meds are then sent to the doctors office. So: medicare covers cost of doc visit and actual injecting,- secondary insurance covers the medicine (botox) that is in the vials to be injected.

I want to also touch on a few other things -- FIGHT for your RIGHT to get the procedures you need!! IF you have neuroPATHY, you cannot have the surgeries that will work for neuralGIA - cause that is not where the pain originates. there is no blood vessel being compressed, etc. ATYPICAL Facial pain is a REAL diagnosis - and you most certainly are able to get Botox.

I have not heard of injecting it into the occipital nerve -- this would not work for trigeminal nerve damage -- the botox needs to be injected into the areas of pain --

IF you had an infection, be SURE that you still don't -- have the CT's, the MRI's and get your butt to a TOP ORAL SURGEON that SPECIALIZES in OSTEOMYELITIS of the Jaw. I am NOT kidding about this. THIS is why I have such terrible nerve damage - dentistry gone bad which in turn left me with OSTEOMYELITIS of the mandible a/k/a an JAW BONE infection - -if this is what is going on you do not yet have trigeminal neuropathy. PLEASE get it right for yourself!

dr. ruggiero -- nj/ny
dr. zicarrdi -- nj/ny
dr. foote - pa

if the above docs are not in your area --- CALL THEM and ask WHO they would recommend. I am SERIOUS! not every neurologist understands the teeth/jawbone thing -- they only understand the NEUROPATHY or NEURALGIA .. you must remember that each doctor has a speciality -- find that doctor and g-d bless you.

praying for ALL of our pain to go away. !!
just, facefacts

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@ facefacts:

I suffer from not only atypical trigeminal and other cranial nerve neuropathy, but chronically from "semi-rural hick town doctors" syndrome. I just can't find anyone in any general or medical specialty (including dental) who is willing or able to take on the task of finding out what is at the root of my problems.

Believe me, I have doctor shopped. I have a master's degree in nursing, so I am no dummy. This is actually quite a handicap in dealing with the quality and experience level of our local docs. I am a bit hopeful at the moment because I managed to get an appt on the upcoming Tuesday with a top neurologist just four hours away at a major medical center. I am hoping to beg my way into a walk-in hematologist appointment at the same med center on this trip, or to get one lined up fairly soon.

I currently do believe that my increasing debilitation (this has gone on since mid-October) may possibly be caused by an ongoing systemic virus, with herpes zoster (shingles) being the primary suspect. I have not had the painful rash, but it seems that almost 1/3rd of cases of shingles do not present with an external rash.

I believe that the virus or possibly another infective agent caused an acute infection in my thyroid a few months ago, as well as having made my anemia much worse than usual over the past months, as well as infecting and thus affecting several of my cranial nerves. This virus or agent has a regular acute phase and remission phase (5-6 days feeling really crummy and can barely get out of bed, then 2-3 days feeling a little less crummy and a little more energetic but still very debilitated).

I coincidentally had the worst cold and flu-like illness in my lifetime memory in October...severe sinus infection, coughed and coughed, had diarrhea, aches, chills and fever, etc. Then in November, I had a high TSH level and had all the signs of hyperthyroidism...severe heat intolerance, serious sweating episodes, nausea, muscle aches, joint pain, general malaise, diarrhea, etc. The endocrinologist (actually, couldn't get to see her, so this was ordered by her Physician's Assistant) took me off of synthroid in mid-December when I had my 6 month checkup for Type 2 diabetes.

That is yet another medical mismanagement nightmare. I was put on metformin about 5 years ago after a high insulin level, subsequent to two borderline high fast blood sugars (98) and general malaise. I was skeptical at the time and asked for a glucose challenge test, but it was, "Oh, that won't tell us any more than we already know, so here, take this and come back in 6 months." I have since been told by another endocrinologist (second opinion with a thorough history and appropriate labs done at that big medical center) that I do NOT have diabetes and never have had it! I went off the metformin and pioglitazone immediatly around the 1st of January and have had exactly the same blood sugars since then, so I believe the second opinion is the right one, and I wasted 5 years of treating something I did not have with drugs that probably exacerbated my anemia and general state of health. Don't take metformin if you have an alternative, it is one of those casually-prescribed drugs that is in fact quite dangerous. And if you aren't actually diabetic, it will not do one thing to change the way you feel or the way your body handles insulin intolerance...in fact, it will make the whole glocose metabolic pathway that much worse.

In September, this same endocrinologist's P.A. told me to stop taking the acyclovir that I had been taking for 8 years as a prophylactic measure after being unwittingly exposed to genital herpes and having several outbreaks in the first three years after exposure. She calculated that my approximate 10 year chronic low RBC and Hemotocrit and other symptoms of anemia must be due to the acyclovir. My anemia has not responded to B12 injections (monthly IM of 1000 units of cycnocobalamin), folic acid (Deplin, a more absorbable form) and iron (oral ferrous sulfate).

Over the past few days, I have been talking with some forum folks about B12 deficiency anemia, and it has been not only an eye-opener, but also a good experience with group and individual support. The only hematologist in our area is booked until May and I had to do some jumping up and down just to get on her appointment cancellation list. I am hoping to get a walk-in hematology appointment on Tuesday at the same medical center where I have the neurologist appointment.

It is bad to have to drive four hours every couple of weeks to get the kind of essential and competent diagnostics and treatment that I should be able to expect locally. But I will do it because I am really a wreck after more than 10 years of serious anemia and the most recent round of almost 5 months of severe malaise and now the onset of neuropathy.

It is interesting to me that it was just after I stopped the Acyclovir that I had the most severe acute episodes of the flu-like symptoms. I have not started taking it again because of having the upcoming neurologist appointment and not wanting to obscure the picture, but it is something I will definitely try if he does not put me back on it. There are better drugs for systemic herpes. I am similarly holding off on trying sublingual B12 and other supplements until I can get someone (anyone!) to do some baseline labs. If I don't manage to get to a hematologist soon, I may resort to paying full price to get what I need from a local lab. Armed with those, perhaps I can get someone (anyone!) to prescribe a more absorbable quality and quantity of B12, to start with.

Meanwhile, I do have a call in to the local neurologist who did the MRI and diagnosed trigeminal neuralgia (even though there was no compression or other evidence of TNeuralgia on the MRI). I doubt that anything will come of that. I think that I have been kissed off as being too complicated.

Thank you so much for your encouragement. I will keep the info on hand about your Colubia docs and will be back in touch.

Would you mind telling me what labs or other diagnostic means were used to diagnose your osteomyelitis?

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goodness, Pena -- I am hoping for ALL the best for you! it infuriates me that doctors do not want to treat "complicated" conditions, or see only part of the entire elephant and not the whole of it *us*!

After my dental trauma it wasn't hard to know there was a raging infection -- but ALL the docs passed the buck back and forth - from the dentists/oral surgeons/neurologists/ and yes, the psychiatrists. it was when i went into see one of the above docs who diagnosed me 4 months after the initial trauma via examination and subsequent MRIs, CATs, blood tests. When he opened my gums to reveal the jawbone he literally shrieked == and proceeded to remove part of the inside of my face and part of my jawbone. it took 3 surgical debridements to get rid of the dying tissue and bone. HELL. is the only word that is eloquent enough to explain it! Now, I am left with severe nerve damage. I do not know if the docs I listed will be able to help you, Pena. do NOT give up -= keep going - keep pushing and find a doctor that will listen to you and give you every single test you ask for and he/she asks for. we must become our own advocates when we are chronically ill. have you had a good diagnostic blood test of all your levels. i mean ALL of them -- every hormone.. everything?! I am pursuing the bioidential hormone therapy because i do believe my estrogen is so low that i cannot tolerate much pain any more. i also know that i have chronic inflammation - because when i take nsaid's i do get some relief. I want my elephant fixed! :)

praying for you
just facefacts

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I have the same condition of neuropathy from three bone surgeries above tooth number 14 in the maxilla. The tooth was pulled prior the NICO surgeries and bone replacement and an implant allowed the bone to heal. I still have trigeminal neuropathy from the trauma and I would like to find a neurologist who would inject the botox right at the pain sight and along the TN sight. I hope I could find one in Calif. or the Northwest. Can anyone tell me where the right Neuro is located?

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Hi Coping, sorry to hear about your pain :(!!

My recommendation is to phone columbia presbyterian neurologists - ask for who specializes in facial pain - and then tell them you are desperately looking for a doc in CA that can inject botox. They should be able to help by looking up.. OR you may go to a top hospital near your area and ask about facial pain neurologists and give a call. I just cannot give my email address here, if you give yours I can send more info. wishing you the best and less pain!
just facefacts

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columbia presbyterian is in Manhattan, NYC

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