Skip to content
in this discussion +18 following
lawrencia10255 lawrencia10255

38 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?  



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.