American Trigeminal Neuropathy

Die nachfolgende Fallserie zu neuropathischen Trigeminusschmerzen habe ich hier gefunden. Ich übersetze einige Geschichten, und zwar die, die mir am interessantesten erscheinen.



* By twowesties * Posted April 9, 2008 at 9:49 am · 67 replies 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. View 67 replies PITTERPAT

Ich habe eine Neuropathie (nicht Neuralgie) des Trigeminus, die mein Leben total geändert hat. Bevor mein Doktor mich auf Cymbalta [Wirkstoff = Duloxetin] umstellte, war der brennende Schmerz in meinen oberen Backenzähnen unerträglich. Das einzige was half, war Vicodan [Opiat]. Ich muss arbeiten und ich habe Glück, dass mich das nicht schlafen läßt, aber es nichts das ich dauernd benutzen möchte. Diese Diskussion dient dazu anderen wie mir emotionale Unterstützung zu leisten und mitzuteilen, was hilft, und was nicht.

* By PITTERPAT * Posted April 10, 2008 at 9:46 am 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 🙂 jeanie379

* By jeanie379 * Posted April 10, 2008 at 12:49 pm 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 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. facefacts

* By facefacts * Posted October 15, 2008 at 6:14 pm 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! facefacts

Hallo, Ich hatte eine schlimme Verletzung (zahnärztliche Chirurgie, die zu einer wahnsinnigen Infektion, Osteomyelitis im Unterkiefer führte), die dann zu einer trigeminalen Neuropathie wurde … Das EINZIGE was bei mir funktioniert hat (und ich habe alles gemacht, Schmerz Medikamente, Anti Depressiva incl. Cymbalta, sogar einen Stimulator im Gesicht) nichts hat geklappt. Ich habe Botox Injektionen direkt in die Schmerzstellen und entlang des Trigeminus Nervs bekommen. Das hat den Schmerzlevel heruntergebracht von 9 auf 2 !!! Ich wäre nicht hier ohne das. Das dahingestellt lassen Sie mich sagen, dass sie darüber redeten, mich im Hirn zu chirurgieren und einen Stimulator dort einzubauen … Botox funktioniert auch bei Migräne … es gibt eine 50/50 Chance, dass es funktioniert und du brauchst einen Top Neurologen, der sich in Gesichtsschmerzen spezialisiert. Ich habe Glück auf der richtigen Seite der 50% zu sein. Ich hoffe, dass das jemand hilft.

* By facefacts * Posted October 15, 2008 at 6:16 pm i meant to sat maxilla, not mandible 😉 mtnshell

* By mtnshell * Posted November 16, 2008 at 1:02 pm 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 pepper1

* By pepper1 * Posted November 17, 2008 at 10:58 am 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. facefacts

* By facefacts * Posted November 20, 2008 at 10:32 am 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 Hawaii-Pain-man

* By Hawaii-Pain-man * Posted December 27, 2008 at 5:40 pm 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!!! KerryEngle

* By KerryEngle * Posted December 29, 2008 at 11:14 am Has anyone had Botox injections to reduce pain for thier Trigeminal Neropathy? Please let me know, we are at the end of our rope. facefacts

* By facefacts * Posted January 1, 2009 at 1:37 pm 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! Hawaii-Pain-man

* By Hawaii-Pain-man * Posted January 10, 2009 at 3:44 pm 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. Ninong

* By Ninong * Posted January 22, 2009 at 11:40 am 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. Ninong

* By Ninong * Posted January 22, 2009 at 11:44 am Correction: I meant to say that my background pain is about a level 2 or 3. Pena

* By Pena * Posted February 17, 2009 at 3:40 pm 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. facefacts

* By facefacts * Posted February 19, 2009 at 11:50 am 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 Pena

* By Pena * Posted February 19, 2009 at 2:16 pm @ 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 p

* By facefacts * Posted February 22, 2009 at 9:42 pm 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 Coping

* By Coping * Posted February 26, 2009 at 11:33 pm 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? facefacts

* By facefacts * Posted February 27, 2009 at 9:26 am 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 facefacts

* By facefacts * Posted February 27, 2009 at 9:27 am columbia presbyterian is in Manhattan, NYC Jerrysmom

* By Jerrysmom * Posted March 10, 2009 at 12:02 pm Hi All – I just joined to let you know about my experience with trigeminal neuropathy. Last July I took a tumble down the stairs and planted my face through drywall at the bottom of the stairs. I was lucky b/c a CAT scan showed no fractures. In November I started having pain in my lower, left front teeth. I went to the dentist begging him to pull those teeth and he told me the pain was not dental. I did research and thought I found I had trigeminal neuralgia. I went to a great neuro surgon whose specialty is TN. He told me it was post-tramatic trigminal neuropathy. He did not hesitate in scheduling me for gamma knife surgery. I see from the postings that some doctors don’t consider that for neuropathy. I had the procedure one week ago and am pain free! So it can work for neuroPATHY. Find a neuro who will do it! If I can be of help shoot me an email. Bridgie

* By Bridgie * Posted March 16, 2009 at 2:56 am Like „facefacts“ I too developed trigeminal neuropathy after trauma from osteomyelitis and several very invasive debridements and worse. Its taken me almost 5 years to get this diagnosis. Sometimes I develop migraines from the neuropathy pain and wish I were not alive. I’m hopeful as I now have a really great neurologist. Coping

* By Coping * Posted March 18, 2009 at 3:03 pm hi facefacts I called Dr Greens office(in NY) and they don’t know any neuros who do botox for TN neuropathy. I just called UCLA Botox Neuro clinic and they don’t do it just for facial neuropathy. I had exactly the same condition as you have with three jawbone surgeries in the maxilla above tooth #14. Where did they inject the botox for your treatmernt ? outside in the face or inside the mouth on the jawbone and did they do it for muscles or just for the pain? How many units did they inject? coping facefacts

* By facefacts * Posted March 18, 2009 at 8:20 pm JerrysMom i am stunned and astonished that this procedure was offered and worked for you. I am thrilled to hear you are pain free! WOW! How long did you have the pain? I am going on 71/2 years. Bridgie, HUGS! I so get that! Coping — I am floored that they didn’t know — did I give you the telephone number> Here it is: Areas of expertise Headaches Facial Pain Head and Facial Pain 16 East 60th Street, Suite 440 New York, NY 10022 Phone: (212) 326-8456 Fax: (212) 326-8530 DR. MARC GREEN and IF you have Medicare there is another neurologist in his office Dr. Henri-Cesar they SPECIALIZE in head and facial pain — trust me, they do botox injections for trigmeninal neuropathy. WISH i could give you my email, i am trying to stay anonymous 😉 IF you give me yours I will get in touch. They inject the botox in the exact location of pain — along the trigeminal nerve – in my forehead, temples and through my hair and down back of head. you canNOT get injections inside your mouth or jawbone – also, Botox in the face has a cumulative effect and the more often you get it the better it works. BUT you cannot get it more than every 80-90 days and it can wear off in 60 days and take 15 to work (ugh).. but it gets better over time.. works quicker and lasts longer. I am SO going to read about the Gamma Knife surgery again!! JerrysMom.. would you share who your doctor was? What tests you had to determine that it was an option for you and anything else you think necessary for me/us to know. Oh g-d if this works!! facefacts

* By facefacts * Posted March 18, 2009 at 8:21 pm i don’t know if i hit reply after somebody’s post it will alert them via email … but i am posting again to JerrysMom: JerrysMom i am stunned and astonished that this procedure was offered and worked for you. I am thrilled to hear you are pain free! WOW! How long did you have the pain? I am going on 71/2 years. I am SO going to read about the Gamma Knife surgery again!! JerrysMom.. would you share who your doctor was? What tests you had to determine that it was an option for you and anything else you think necessary for me/us to know. Oh g-d if this works!! SOOOO HAPPY FOR YOU! Jerrysmom

* By Jerrysmom * Posted March 24, 2009 at 3:14 pm Hi Facefacts, Sorry I did not answer sooner. I really lucked out. I started feeling the pain last November – you know thought it was a toothache. I got to the dentist, needed lots of work on my teeth so I showed him where I felt the pain and he told me „that’s the best tooth you have.“ He then numbed all of my lower teeth for a deep cleaning. After he was done and left me there for a second, I felt the pain but even worse. I felt nauseous, started to shake and sweat (I’m sure you know that feeling.) He told me that it sure wasn’t dental and comented maybe it was something nuerologic. I searched the internet and again lucked out and found trigeminal nuerolgia on wikepedia. I made an appointment with a neurologist and AGAIN was lucky, he specialized in trigeminal neuropothy and was one of two Dr’s in our region that does gamma knife surgery! He told me what I have is trigeminal neuropathy b/c of my accident (falling down a couple of steps and planting my face into the drywall at the bottom the steps :). Not funny at the time though. I damaged a nerve on the top part of my cheekbone. Anyway his name is Dr Prall. I sure hope this helps you. I am so sorry you have had to go through this for seven and a half years. The gamma knife surgery is a piece of cake compared to what you are going through. I was off work the day of the surgery and two days after. BTW he had to call it trigeminal neuralgia for insurance reasons and maybe to get approval. (don’t mention you were told that if you talk to them) Please let me know if this was of any help. Also they told me that this has a 70% chance of working and the full benefits may not be fully realized for days, weeks or months. Jerrysmom

* By Jerrysmom * Posted March 24, 2009 at 3:16 pm I mean he specializes in trigeminal neuralgia. Jerrysmom

* By Jerrysmom * Posted March 25, 2009 at 3:49 pm I just added my email address to my shared information. Feel free to send me an email if you would like. twowesties1986

* By twowesties1986 * Posted April 8, 2009 at 3:57 pm Hi everyone. I’m the original twowesties who started this discussion. I just want to thank all of you for sharing your stories. I am still having pain but not quite as often. I quit work last Oct. and have noticed a decrease due to less stress. As I’m sure you know, neuropathic pain is exacerbated by stress. But, I am in no way pain free. An update – had to give up Cymbalta as it quit working and then I developed a severe depression while on the drug. I have OCD and depression so had to go back on my „old faithful“ — Zoloft which does nothing for pain. Tried two old antidepressants which are used for nerve pain but had bad reactions. I’m now on Neurontin 300 mg – 3 x day (can’t increase due to vision blurring), 150 mg. Zoloft (for depression), generic Klonopin at night for restless leg syndrome and burning mouth syndrome. I have found that the generic Klonopin occasionally helps with the milder burning. This tablet can actually be put against the area that hurts and let it disolve. The only thing that really stops the pain in its tracks is Vicodin. I am able to take 1/2 of a pill and this usually does the trick. However, I still avoid doing this. On another note — I also learned a trick which does help, on occasion. I buy sugared ginger from my store and put a piece against the area that burns and throbs. For some reason, this seems to help for a short period of time. My best to everyone for their suggestions. Please post new changes so we will be able to continue to share our experiences. Best, Elizabeth drausch

* By drausch * Posted April 12, 2009 at 11:21 pm I am trying to determine if what I am experiencing is early onset of this disease. On the bone below my right eye socket and where my sinus is below hurts with stabbing pain if I push on the area. It goes away if I release the pressure. I thought it was sinuses but the more I read I am fearful this is the beginning of TN. The pain is very minor and intermittent but if I really push hard it would send me through the roof. I have not had an episode of pain described here yet. Mine is half a second or less, sometimes also when I chew but only for a flash of a second. Does this disease hit hard and fast or is is subtle at first? Thanks for any info. So much of what I have read of your experiences with this is heartbreaking but I see a lot of brave people not giving up. Your stories are very inspiring that there is hope for relief. Drausch Lazaros

* By Lazaros * Posted April 23, 2009 at 5:08 pm Hello i have aprogressive atrophy of my myscles of mastication.I have visited a doctor and i was told that probably i have tringemnal neuropathy.I don;t feel pain or anything but my facial muscles have become smaller.I don’t know what to do in order to stop this atrophy.Have you heard anything in order to stop the atrophy ? zbee

* By zbee * Posted April 25, 2009 at 9:38 pm Hi all, I just joined too – so greatful to find a site with help and inspiration. My trigeminal neuropathy started with a dental apicoectomy surgery to an upper bicuspid after a root canal failed. For anyone who hasn’t heard of this surgery – they drill through the jaw bone to get to the root tip and take out infected tissue at the root tip. As everyone else has said this has been life changing – hard on me and my family and it just helps to find others to discuss this with and get more information from…thank goodness for the internet – because its given me more options than the doctors, dentists and neurologist I’ve been to. I’m particularly interested in the botox injections as the person from Missouri mentioned. We don’t have health insurance and all of this is getting expensive. So the botox sounds the most reasonable and promising… We live in Arkansas – so if the person in Missouri has found any good leads I’d sure appreciate any information you could give me. Thanks to everyone who has posted here – I wish you all the best and pray for all our healing. zbee

* By zbee * Posted April 25, 2009 at 9:59 pm have you had any luck finding a good neurologist in Missouri to do botox injections? I’m just joining the website and am also interested in botox injections – we live in Arkansas, so any info you might have would be much appreciated….Thank you & god bless Pena

* By Pena * Posted April 25, 2009 at 11:19 pm I have found a neurologist who will give botox for migraine prevention, but my insurance is a limiitation. The shots in my forehead and between my eyebrows have lasted for 3 months. I didn’t have any fewer migraines and I didn’t notice any difference in the trigeminal pain. I don’t know whether the shots were given in the correct locations, since they were given for migraines and not for trigeminal neuropathy (my neurologist doesn’t think that I have that, he thinks that my trigeminal pain is part of my migraines and/or is related to a possible seizure disorder, even though I have never had this pain before and have had migraines for over 40 years and have never had a seizure). I can’t name him, but the neurologist is connected with the Ozarks Community Hospital and he has an office up north in Springfield at the hospital and also in Nixa. There is a very good group of neurologists in Branson, connected with Skaggs. I hope you have good luck in contacting one or more of these docs and can get your botox injections. gwhelp

* By gwhelp * Posted May 5, 2009 at 12:50 am Hello everyone I am so grateful for everyones post and all the good advice and support you have for one another. I have been in sever pain for 6 years now and am loosing all hope I live in mexico and have seen more than 30 drs and finally went to LA to see a specialist and was also diagnosed with trigeminal neuropathy I am now investigating about the botox although went to see a dr. here in mexico and told me he thought it wouldn’t help but I guess all that’s left is to keep on trying. If anyone can give me the name of a Dr. or more helpful advice I will really appreciate it. Hope everyone gets better I know what it fells like mandyblue

* By mandyblue * Posted May 5, 2009 at 8:26 pm I developed Trigeminal Neuropathy after having dental work in 1983. (a crown). I have never been able to find anything that will touch the pain. I develop what the doctors call aseptic meningitis during a flare up. It seems to be the beginning where all my auto-immune problems began, or at least it was the first of all the problems that have never left. I have learned a great deal from all the postings here. My best wishes to all. Mandy childof60s

* By childof60s * Posted May 5, 2009 at 11:59 pm So happy to find you all! I also developed trigeminal neuropathy following a root canal, perhaps it was the injection, no way to know for sure but that has become the pivotal moment in my life. After three failed root canals on the same tooth and an extraction, with second opinions from a million oral surgeons and dentists, all of whom were totally unhelpful, I discovered online my incredible dentist, Dr. Gary M. Heir, who is a clinical professor at New Jersey Dental School and has a private practice in Bayonne NJ. He is a past president of the American Academy of Orofacial Pain, and has been a godsend. He diagnosed me immediately, and has been totally honest with me in my prognosis, and is the first professional I’ve met to take my pain seriously. With carefully titrated medication I went from being a 9-10 to a 3-4 over the past 3 weeks. He has taken a mold for a stent which will hold topical medications he had compounded specifically for me which he believes will reduce my pain even further. I’ll be getting that later this week and will keep you posted on how well that works. He has referred me to a psychologist specializing in working with clients dealing with chronic pain, as I was so depressed I was close to suicidal. I hope to stay on this track though he did remind me that there will be good days and bad days but I WILL be able to have a good full life with trigeminal neuropathy. gwhelp

* By gwhelp * Posted May 7, 2009 at 1:17 am hi childof60s that is such great news i hope all gets even better. I have also seen a million docotors and am pretty sure I have trigeminal neuropathy but would love to be diagnosed correctly. What exactly did Dr. Heir do to take your pain down to a 3-4 that’s amazing was it only with meds. How long have you had your condition and how long did it take you to fell better? sorry to ask you so many questions but this has been really helpful. please keep us posted thanks everyone, any questions feel free to ask childof60s

* By childof60s * Posted May 7, 2009 at 10:08 am hi again, gwhelp: I was injured during a root canal in January of this year. so far, the pain was brought down thru meds alone (Cymbalta). it took about 2 weeks to get down to a 3-4. however, this week was a stressful one and that seems to impact my mouth pain, so i’d say it’s a 5-6 this week. :/ this afternoon i receive the stent and will learn how to apply the topical medications. i’ll let you know how it goes. I found Dr. Heir through the American Academy of Orofacial Pain website. I just looked and found that there are several members in Mexico! GERMAN RIOS BARCELO Bul Navarrete #72 Edf. Ma Fernanda Hermosillo, Sonora 83200 MEXICO TEL: 2-12-21-68 FAX: 2-12-21-68 JUAN GERARDO AGUAYO GARCIA Pesqueira #116 Y Napoles Prados del Centenario Hermosillo, Sonora 83260 MEXICO TEL: 011-66-22134738 FAX: 011-66-22134135 Email: MANUEL SAAVEDRA-GARCIA, DDS UNAM Circuito Institutos Dacultad De Odontologia S/n Cd. Universitaria Mexico, DF 04510 MEXICO TEL: 5-56225583 Hopefully you are near one of these pratictioners. best to you! gwhelp

* By gwhelp * Posted May 7, 2009 at 5:52 pm helloo thank you for answering so soon, sorry to hear your pain has increased hopefully the topical meds will work. I will look into the drs yo found for me thank you so much please keep us posted to see how you are doing. best wishes childof60s

* By childof60s * Posted May 7, 2009 at 11:30 pm Hi all, Just an update: I received the stent today and learned how to use it with the topical. Seems to be working really really well, i’m down to a 1-2! We’ll see if this lasts! The ingredients of the topical are carbamazepine, libocaine hydrochloride, ketamine hydrochloride, ketoprofen, gabapentin, phenoxybenzamine hcl and pentoxifylline. Has anyone else used a stent? Supposedly the more peripheral the injury, the better the result. Read about this treatment here: Hope this is helpful to others suffering with trigeminal neuropathy! gwhelp

Hallo an alle, nur die neuesten Nachrichten: Ich habe meinen Medikamententräger heute erhalten und gelernt, wie ich damit das Oberflächenmittel benutze. Es scheint wirklich sehr gut zu wirken, ich bin [schmerzmäßig] runter auf 1 – 2. Wir werden sehen, ob das anhält. Das Mittel ist zusammengesetzt aus: Carbamazepin, Lidocain, Ketamin, Ketoprofen, Gabapentin, Phenoxybenzamin und Pentoxifyllin. Hat irgend jemand sonst schon einen Medikamententräger benutzt? Es wird angenommen, dass der Erfolg um so besser ist, je peripherer die Verletzung liegt. Lesen Sie über diese Behandlung hier: Ich hoffe, dass dies hilfreich für andere Leidende an der trigeminalen Neuropathie ist.

* By gwhelp * Posted May 11, 2009 at 1:27 am Hello childof60s that is great news i will check on that website to see if it can help me and hopefully others. please keep us posted on your advances thanks best to everyone neversame

* By neversame * Posted May 19, 2009 at 5:57 pm 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 childof60s

* By childof60s * Posted May 27, 2009 at 4:15 am 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! gwhelp

* By gwhelp * Posted May 27, 2009 at 10:02 pm 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 childof60s

* By childof60s * Posted May 28, 2009 at 12:40 am 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: 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. neversame

* By neversame * Posted May 29, 2009 at 4:08 pm 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. childof60s

* By childof60s * Posted May 29, 2009 at 5:37 pm 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:{16DCC896-A8EE-4207-A98A-1D3 BD2DB50AE} If you want to talk to my dentist, Dr. Gary Heir, he can be reached at Good luck! neversame

* By neversame * Posted June 1, 2009 at 11:57 am 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. sydney2319

* By sydney2319 * Posted June 6, 2009 at 11:40 am 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…. sydney2319

* By sydney2319 * Posted June 6, 2009 at 11:43 am 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 facefacts

* By facefacts * Posted June 6, 2009 at 1:50 pm 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! sydney2319

* By sydney2319 * Posted June 6, 2009 at 3:46 pm Thanks for the info…I too had a Sural Nerve graft (nerve taken from foot) to remove a neuroma last may… 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 🙂 childof60s

* By childof60s * Posted June 6, 2009 at 7:56 pm 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! gwhelp

* By gwhelp * Posted June 7, 2009 at 12:11 am 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 gwhelp

* By gwhelp * Posted June 7, 2009 at 12:28 am 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 sydney2319

* By sydney2319 * Posted June 7, 2009 at 9:09 am 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….. sydney2319

* By sydney2319 * Posted June 7, 2009 at 1:26 pm 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? Gary1970

* By Gary1970 * Posted June 30, 2009 at 9:57 am 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! kristin76

* By kristin76 * Posted July 21, 2009 at 1:24 am 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. * By linnirose * Posted August 14, 2009 at 10:23 pm 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. t-head (Inactive)

* By t-head (Inactive) * Posted November 12, 2009 at 2:52 pm 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. kristin76

* By kristin76 * Posted December 3, 2009 at 1:17 am you need to be on medications which work on nerve pain. percocet, and even morphine, does nothing for neuropathic pain, unfortunately. anti seizure and anti depressant meds work to control nerve pain, like tegretol, lyrica and elavil. talk to your doctor about prescribing these more appropriate medications for you. hopefully you will start to feel better soon. Evelynrose (Inactive)

* By Evelynrose (Inactive) * Posted December 26, 2009 at 7:14 pm I suffer the same symptoms and it doesn’t make sense but a friend on the TNA website told me to try moist heat. I made a small beanbag with a ’nose‘ hole and I’ll be darned, it works. I heat it in the microwave, even INSIDE my mouth. I have now purchased a Thermaphore Heating Pad (I got mine on Ebay, $40 or so) and am awaiting it’s delivery. It will allow me to relax my jaw and perhaps start some stretching excercises, it’s helped her. I use it 3 times a day, laying flat and forcing myself to relax. Who would have though heat would help burning? Worth a try? Was for me. The BEST of luck. Let me know if you try it and if it works. PITTERPAT

* By PITTERPAT * Posted April 7, 2010 at 1:27 am Hi, I have severe spastic Cerebral Palsy. I have a titanium pump, made by Medtronic, that is about 2 inches in diameter, and one inch in thickness. It has a small catheter that is attatched to it, which takes medication to my spinal area in my back, helping reduce my spasticity. I had a test dose of medication before having the pump implanted, to see how my body responded to the medication to see if I would be a successful candidate. The medication was placed into the spinal area in my lower back by my Neurologist. I received my pump in June of 2004 and currently it is April 2010. I have not had any problems with my pump, or from the initial surgery. After surgery I had IV medication as a precaution. Having the pump has been helpful, yet nothing is perfect, yet I feel for me the venture was worth while. I had a Neurosurgeon implant the pump under the skin of my adomen. I do not really notice that it is there anymore, as it just seems part of me and natural. Should you have any questions, please feel free to send me at email at You can all so check out, I all so see my Neurologist once every few months, the old medication is taken out by inserting a needle into the port on my pump. Then the new medication is put into my pump. Myy pump is computer programmed, the dosage can be increased or decreased according to what ever my needs are. A print out is made and I always recieve a copy that I keep in my wallet. I all so received a card from Medtronic stating that I have an infusion pump, the implant date, model number and name and phone number of my doctor. Battery life is anywhere from 5 to 7 years, it just depends on the dosage of the medication and the life cycle of the battery. This June 2010 will be my 6 yr mark. Hope this helps. Have a good day, and best wishes to you. FacePain

* By FacePain * Posted April 7, 2010 at 5:19 pm Trigeminal neuralgia may be caused by different types of head trauma. There is a classification system that many Medical Doctors are completely unaware of; often to the detriment of their patients treatment. Therefore, the most accurate diagnosis is TRIGEMINAL NEUROPATHIC FACIAL PAIN (TNP) or POST-TRAUMATIC TRIGEMINAL NEURALGIA = facial pain due to injury to the trigeminal nerve caused from head or facial trauma (for example: a car accident or falling off a ladder, dental trauma, sinus trauma, etc.) if your face pain followed one of these types of traumatic events. coffeedillon


Für 30 Jahre wurde ich falsch diagnostiziert als Trigeminus Neuralgie (Tic de Larue), bis ein Neurologe in Houston sagte, dass ich eine chronische paroxysmale Hemicranie habe und mir Indomethacin verschrieb. Bingo. Ein kleiner Schmerz, eine Pille und es geht weg. Diese zwei Erkrankungen [Neuralgie und paroxysmale Hemicranie] haben keine bekannte Ursache, sind aber die schlimmsten schmerzenden, die die Menschheit kennt (kein Scherz), – wie eine Eishacke in Ihrem Kopf alle paar Sekunden. Dr. Derman in Houston ist der größte Schmerz Doktor in der Welt.

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