Skip to content
in this discussion +16 following
lawrencia10255 lawrencia10255

36 Replies

  • patyrod patyrod lawrencia10255

    I have bilateral trigeminal neuropathy.  My whole facial area from mid-scalp point to chin and ear to ear and my mouth, tongue, palate, gums and all the mouth mucosa are numb and I suffer from all different kinds of pain in those areas.  The pains are not as intense as those of the sufferers of trigeminal neuralgia, thank goodness.  This numbness is constant and affects my chewing and my speech.  What are your symptoms?

    • lawrencia10255 lawrencia10255 patyrod

      I have it on the right side. I deal with a lot of sharp pain, sometimes burning pain as well. The burning can last weeks or months but the sharp pain is pretty much everyday, the level of pain changes though. It makes it difficult to eat when it's really bad, brush my teeth, speak, or even move my head sometimes. At the moment I'm just experiencing sharp pain here and there, not a lot and I'm so glad, but I know it won't be this good for too long.

    • patyrod patyrod lawrencia10255

      Oh, I thought that your symptoms were for Type 2 Trigeminal Neuralgia.  My rheumatologist told me that trigeminal neuralgia is pain only and that trigeminal neuropathy is numbness and pain.  Do you have any numbness?  Did you have an MRI?

    • johanna21 johanna21 patyrod

      I have recently been diagnosed with TN, in the last 3 weeks i have lost all sense of taste with numbness in mouth/face/scalp/gums. the only pain im experiancing is constant boringheadache & internittant pain in R nostril, the worst symptom is reduction in co-ordination,confusion, and forgetfullness, all i can explain the feeling is as feeling very spaced out. using an electiric toothbrush is a no no as the vibration make me want to be sick.

      I tried the carbamazpine but this made the dizzy symptoms much worse even on the low 100mg twice per per day dose, so had to stop.

      Im awaiting a neurologist appt at this current moment to confirm the diagnosis made by my GP via symptoms.

      Does anyone know how long these symptoms last as am currently off work, this condition appears to be little known about by general doctors

    • patyrod patyrod johanna21

      Hi Johanna.  I am so sorry that you are experiencing the numbness and loss of taste.  Mine has been constant for almost 18 months.  Luckily, I don't get headaches and my pains are intermittent and not caused by brushing teeth or eating.  No, I don't feel dizzy.  At first, they thought I had trigeminal neuralgia, but they changed it to trigeminal neuropathy after seeing the MRI.  It showed that my trigeminal nerve is not compressed by a vein or artery.  It is inflamed.  Supposedly, it is caused by an autoimmune factor.  Unfortunately, since there is no compression, they can't do surgery.  They can only treat with meds. 

      At the beginning, they put me on Gabapentin and Tegretol.  I had a horrible reaction to the Tegretol, so stopped both.  Before this occured, I already had two autoimmune conditions--Raynaud's and vitiligo.  Six months after the trigeminal neuropathy started, I was struck by rheumatoid disease in hands and knees joints.  Now, they also think that a connective tissue disease is causing the nerve inflammation.  So, I have three or four autoimmune conditions.

      I am currently taking Plaquenil, Methotrexate and Nortriptylene.  My neuropathy has only slightly improved.  At least, I can chew softer foods now without biting myself.  The Methotrexate has helped my joints which were very swollen and painful.

      Don't give up on medication.  Keep trying what they offer.  Have they checked your blood for an autoimmune factor?  Actually, your symptoms of headache, dizziness and nose pain sound like you might have a sinus infection.  Cross your fingers for something like that.

      I have never found anyone in any support forum or group that has my symptoms, so that is why I hang out with the trigeminal neuralgia folks.  It is the closest I can get and hopefully someone else like me will turn up.

    • johanna21 johanna21 patyrod

      Hi Patyrod

      All my bloods have been negative for any autoimmune conditions, my only deficency is vit d, even with injections i am not retaining this hence do get painfull joints if i miss the vit d replacement.

      I have a neurology appointment on the 3rd April which will hopefully be followed by an MRI to detemine the cause of these symptoms.

      sadly you seem to have more things going on, i had optic neuritus 2y ago and lost my vision for 3m in my r eye, this is highly linked to MS and at this time a luber pucture and mri ruled this condition out thankfully.

      with this new episode i will need to be re investigated, i have numbness and burning pain in my R forearm which my gp reports is not linked to TN as this only affects the head & facial nerves?



    • ibrahim57343 ibrahim57343 patyrod

      Hi patyrod

      My condition is just like yours i have a immune condition aswell , and my face nerve on my left got damaged , now iam getting constand burning like a electric current is following on my nerve ,bit of throbbing on my temepel and some mettalic taste around my mouth its been 5 weeks , no electric shooting pains its managebel but the discomfort is bad , iam 30 knowing this is chronic kind of scares me 😓

      Just need your advice has any meds worked for you ?

      And has your symptoms changed at all ?

      They said mines due to a never damage so its not nuraliga more of a nerve pain , its can actually go as the nerve can sometimes heal it self can take 3 years by that time if its still there then its chronic iam just hopeing 🙏

    • johanna21 johanna21 ibrahim57343

      Hi Ibrahim

      My facial numbness lasted about 6 weeks. I had an MRI 6 months ago which was negative for MS but unfortunatley a recent one has come back positive.

      Ask to be screened for MS if you have not already as TN can be linked to this.


    • MyReeRee MyReeRee patyrod

      Patyrod, Turns out I'm The One with almost identical symptoms as yours! It's a first for me too, for I've never found any post resembline the varied issues I deal with. Especially TrigeminaI Neuropathy. And only today found this forum but eager to learn more.

      I was diagnosed with bilateral TN2 right side in 2012 after root canal, endodontics intervention, etc, and have been on a medical rollercoaster (and massive pain) ever since. Long story short, after receiving TN2 diagnosis I finally went for Gamma Knife surgery Dec. 2016 after pain had increasingly intensified w/little relief. Tried every Rx you can throw at it with no relief. Also, like you I have auto-immune issues, RA (in hands and hips), and Raynaud's.

      After Gamma Knife 7 mos ago, my pain went beserk and finally went to Mayo Clinic in Rochester May, 2017. Doctors there alerted me that I'm dealing w NEUROPATY and not Neuralgia with little they could do. In fact, I learned the Gamma Knife procedure most likely only intensified the pain in the already damaged nerve. They told me in strong form, DO NOT EVER LET ANYONE TOUCH THAT NERVE AGAIN! They put the fear of God in me with it.

      Only in the past couple weeks back home and into usual events have I notice the numbness he referred to begin creeping into my chin up towards my eye. Not due to see Neuro again for 2 mos. Which is what got me online today finally to learn the difference.

      Mayo Clinic let me know other than continuing the Gabapentin, Elavil, Cymbalta there's nothing that can be done other than learning how to "live with it". They offer a 3-week pain clinic primarily for fibro patients but drs think could help Neuropathy too. Supposedly you attend class 5 days a week, for 17 business days, 8 to 5, and learn how to "rewire" your brain to help deal with this pain. I'm scheduled to go in October.

      Normally I wouldn't be on the Pain Clinic band wagon. But I discovered my Ins pays 100% and w/lower airbnb rates, and Uber, I'm going to try and swing it.  At this point, it's all I know to do. 

      I've ensperienced chronic facial pain for over  5.5 years now. Pain level never lower than 2 and often up to 8 for days/weeks at a time. I'm still tweaking Rx and drs, and something tells me the ride's still not over. I welcome all insight from this forum!

    • rachel31337 rachel31337 johanna21

      Johanna, did you have any symptoms when you had your second MRI recently? I've just returned from the neurologist and was surprised she didn't order me another MRI. I've had neuropathy for 7 months. It was originally face, forearms, pinky finger, some toes. Now it's just in my face but I also now have aching joints and chronic bladder pain that has been there all along. I would have thought another MRI would have been in order. I had a brain & spine MRI 6 months ago.

    • johanna21 johanna21 rachel31337

      Hi Rachel.

      My 2nd MRI was negative in Sept 2016 i had loss of taste/facial numbness and tingleing in my right arm and leg, i went privately for this as my PREVIOUS GP diagnosed bells palsey..which i knew was an error as have had this many years ago!! I have since moved surgeries.

      My 3rd MRI requested by my neurologist only 6mths after the 2nd MRI carried out secondary to the same symptoms as above with additional blurred double vision, loss of co-ordination & balance and extream fatigue sadly has come back confirming MS which even the neurologist was surprised at the marked difference betweeen the 2 MRI' with your symptoms i would request another MRI..on average it takes upto 7 years to link the symptoms and have MS diagnosed..i am lucky mine has been diganosed after only 3yrs as early treatment is the highly recommended..good luck.

    • jan55253 jan55253 MyReeRee

      I don't know the laws in your state or where you live, but medical marijuana is an option that can help a lot, especially the high CBD strains that don't get you "high;" only symptom relief from medical conditions. It gives me very noticeable, although short term, pain and nausea relief. Sometimes it is the very best thing for helping when the pain is very intense and I feel that I just can't go on. Good luck. You have my prayers and best wishes.

    • margaret52603 margaret52603 patyrod

      Hi!  I have some of patyrod's symptoms but not all, and I have also been told that my T. Neuropathy seems to be related to an autoimmune disorder - I have ulcerative colitis that is most likely due to this and also had tracheitis of the type that is most often due to an immunology disorder. My consultant thinks that my frequent migraines (the last one of which 'morphed' into TN without stopping) might have had the same cause.   Like you I was initially diagnosed with Trigeminal Neuralgia but my symptoms really didn't add up to that so I went to see another consultant and, when he seemed unsure, another one after that.  The third one (in London) was far more professional and gave a more complete consultation and explanations.  I can see now that I have a rather typical case of T Neuropathy with a surface numbness and deep burning pain under it, along the trigeminal pathway.  Mine started with that migraine/headache and dizziness/lightheadness before going down the eye/ear/teeth and jaws path where it seems to have remained for the last 4 months. I have been told that T Neuropathy can just go on its own but may last for longer or shorter periods, no one can tell.  Then, or course, it may (or may not) recur.   I am on oxycarbamazpine which makes me feel extra lightheaded, unbalanced and when increasing the dosage I get bad nausea too, even on a low dosage.  But for me it cuts out all pain and I have discovered that if I take vigorous exercise (in a safe place) immediately after swallowing the tablets I avoid the nausea and the dizziness goes quicker too.  I remain rather unbalanced and have to be careful going around corners!  My consultant told me that the nice thing about T Neuropathy (rather than T Neuralgia) is that it is not progressive, that it is intermittent, and that there are a variety of pills to get rid of the pain - whereas T Neuralgia is usually progressive and only a very few medications can help.   So this is a better one to have.

      Glad to be on this list.  Hi and good wishes to everyone who reads this.


    • kim55209 kim55209 patyrod

      I too have bilateral trigeminal neuropathy.  I also have started having burning inside of my mouth.  I have trouble swallowing (no gag reflex) chewing and talking.  my symptoms seem to ease up some if I sit quietly and do little to nothing.  Also I have been drooling!  Have you found someone to help with any of your problems?  


  • johanna21 johanna21 lawrencia10255

    i think i have his conditon althiugh my gp has diagnosed T neuralgiat he pain is secondary to the bilateral numbness and loss of taste, do you also feel spaced out, i stopped the medication as this made dizzy symptoms worse. im currently waiting a neurology appt as also having loss of balance and co-ordination

  • s83681 s83681 lawrencia10255

    Hi i am of african descent living in the caribbean and was recently diagnosed with Trigeminal Neuralgia. I removed 3 wisdom teeth a couple years ago and was diagnosed with TMJ and to this day i still clench and grind my teeth and there is a tight knot in my right jaw. Prior to being diagnosed with TN I had tingling in my face for a while however the pain is only on my right side and it comes and goes but i also have a sore spot in my head (not sure if its from grinding or TN). I am panicking alot because i saw online TN is a symptom of Multiple Sclerosis or i might have an inflamed artery which presses on a nerve. I dont have headaches because i am still able to function however when i get the pain in my cheek bone jaw along my nose and forehead my eyes seem to hurt as well and i feel a bit disoriented (for lack of a better word on my right side) until the pain goes away. My memory is good because remember ever thing (just completed a degree) i have no muscle weakness so its literally just the pain and tembling. I am terribly scared because i am worried that i may have to do an MRI or more test. Please respond someone

    • johanna21 johanna21 s83681

      Hi, an MRI who look for several things including signs of MS and compressed vessels that may be pressing on a vessel causing these symptoms we yoi are having. Don't be scared of the MRI this is painless and will show very accurate results which may be helpful in managing your symptoms as I know first hand how awful they are.

    • s83681 s83681 johanna21

      I do hope its a result of my TMJ which i have had for the past few years. I just ate before i responded and the pain is here....i have an appointment to do ESR and CRP test to check for inflammation and after that i assume based on the results i would know what is next. Other than this I am pretty confusion no weakness no blindness. Still scared sad

    • johanna21 johanna21 s83681

      Hope all goes well with your blood test, inflammatory markers are generally within normal range with this condition. The best person to treat this condition is a neurolgist, I have my appt in 2w and hoping he can offer some element of mangement, I fear my sympoms could be linked to MS, i really hope they are not.

    • patyrod patyrod johanna21

      Since your tests so far have been negative, doesn't that rule out MS?  Hopefully, your forearm pain is just an injury or maybe carpal tunnel syndrome.  Did you have an Xray?  I am having carpal tunnel surgery on both hands tomorrow.  When I got the rheumatoid disease last year, I started getting severe numbness and pain in my hands and forearms.  They did a nerve test and found the carpal tunnel problem.  The rheumatoid disease makes the joints and tendons in the hands and wrists swell and the wrist joints, part of which are the ends of the forearms, irritate the compressed nerve inside the carpal tunnel (or something like that). biggrin  I can't wait to get this procedure done.  I am sure that I will be much more comfortable. 

    • johanna21 johanna21 patyrod

      Best of luck with your surgery.

      My prev MRI 7m ago was negative, i need to have these annually due to the past & now presenting symptoms, this latest occurnace has been the worst and although TN very obvious, the L sided loss of balance and co-ordination has raised further concerns re MS...hoping this is not the case and something compressing a nerve vessel, had a ct scan this week which showed an enlarged R optic nerve.. the ct ruled out stroke and any type of tumour which was a huge relief.

    • s83681 s83681 johanna21

      I am happy your MRI was negative......I would be getting my results tomorrow but the dr said if the ESR and CRP are normal then he would rule out inflamation for now....that is until i visit a dentist and see whats up because i  do have cavities. I acutally stopped the Tegretol and took an ANSAID 8 hours ago and i havent had any pain i am going to take another before the pain even decides to come back....dont know why i didnt try this particular pain killer before. Really hoping I dont have to reach the point where I need an MRI. i think i should try an optamologist as well to make sure my vision is what my version of normal is because i do wear corrective lense. 

    • jan55253 jan55253 s83681

      Do not be afraid of an MRI. If you are claustrophobic, request an "open MRI" which allows you to see out on the sides a little. It helps a lot. Also, they can give you medication to sort of tranquilizebyou during the procedure so you can relax. An MRI is kind of noisy, but there is no pain. Make sure you are working with a neurologist who treats TN. That is pretty essential.

    • margaret52603 margaret52603 s83681

      You should definitely have an MR and if unsatisfied with your doctor's diagnoses go to another one.  The MR should show up if your T G nerve has the damage typical of MS - it may not be that at all.  DOn't panic, get more tests done and please see good doctors until you get a diagnosis that fits most of your symptoms.  This is a relatively rare condition and not all doctors are up to date with it, so many people get incorrect diagnoses at first.  Don't give up.


  • ibrahim57343 ibrahim57343 lawrencia10255

    Hi lawrencia

    I also have trigeminal neuropathy

    Its not intense its on my left but sometimes it moves over to my right ,

    I get throbbing pain on my tempel , i can feel my nerves getting warm and tingling moveing around

    Not intense but it feels very uncomfortable feels numb , i also get headaches and metalic taste in my mouth ,

    Mine satrted admfter a injury on my left tempel irritating the nerve , thats why its not nuraliga ,

    How did yours start has any medication helped all iam 30 and iam scared that this is going to Stay with me all my life , my doc told me becouse it happend from a accident and pinched the nerve there is s high chance it would recover but could take 3 years hope mines is on of them cases 🙏

    Hope you are feeling better please any advice and help i would love to hear from you or anyone

    • margaret52603 margaret52603 ibrahim57343

      Hi!   Don't worry too much - if your pain is really bearable then you may prefer to put up with it, since most normal painkillers don't work on TN;  however if it really disturbs you then go to a neurologist to get a prescription for an up-to-date and appropriate medication.  The ones that people on this list are prescribed, and that the internet says are most appropriate for these conditions, are all very powerful and you should definitely get your consultant's advice and prescriptions before taking them.  I found that mine made me feel terrible for hours after taking even a low dosage, but after a week or so the nasty side effects got better and lasted for less time, and in my case it was worth it because eventually it blocked all pain.  However you have to take these medications with great care and follow the doctor's instructions to the letter.  Also when you start you should not plan on driving because of the strong likelihood of severe dizziness and lack of proper balance or ability to go on in a straight line.   This gets better I find, unless you are on a very heavy dosage.  This is why I said you need to work out if your pain is bearable or not. If it becomes too much to cope with then you can ask about these medications.  I heard that T Neuropathy tends to disappear on its own but that no one knows if it takes months or years to go.  Sorry about the lack of specific info and I really hope yours goes soon.  

  • dona40912 dona40912 lawrencia10255


    I have Trigeminal Neuropathy. It started as a tooth ache 1 year 8 months ago. 4 months visiting different dentists, root fillings and lost one molar.

    No idea why or how I got it. Life has been really difficult ever since. I have tried everything, but nothing helps. Medicines, MVD, acupuncture, botox, facial massage,


  • diana31938 diana31938 lawrencia10255

    I do along with a host of others.  Lupus, fibromyalgia, mortons neuroma, Raynauds, migraines, TMJ,  and several more diagnoses.  This diagnosis is small compared to some of the others but no less painful.  It has become more of a nuisance after years of having it.  Not helpful I know.

  • deborah43170 deborah43170 lawrencia10255

    I have idiopathic trigeminal neuropathy which was confirmed around 6years ago, it started with a spasm in my lower lip then went through many progresions now all my head and face are affected with numbness also with, burning and numbness inside mouth, I have only ever been offered medication which I have declined. I have no idea of the outcome of this disorder and am not sure the medical teams do either, I have had mri scans and blood tests with no answer to the puzzle

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.