Hi, for almost two years the pain was in the right ear, the right tonsil area with some stinging on the roof of my mouth. Cymbalta held it off for a little over a year ( about 75% pain reduction). About two months ago it came back harsh.
Has anyone had any numbness/hotness on their face? mine is on the affected side. It feels like I have a sinus infection but its only on one side which makes me fear the neuralgia is spreading. Today is a pretty good day for me! But prior to this the past few weeks have been awful
Yes, I have a numbness and burning kind of feeling on the right side of my face. In particular my ear/jaw line. My teeth on right also have a num feeling. Thinking I should maybe take Cymbalta like you to see if it will help. Pain seems to worsen by afternoon everyday. I'm having fewer and fewer days without pain. My diagnosis is ATN but I think it's something more now!
they Cymbalta helped a lot for over a year. have you ever taken Tegretol? I am on 600 mg a day and do not notice a difference. I'm disappointed because I heard this med was supposed to be the one that would take the pain away if I could tolerate it. I have no side effects except for some hair loss, but no pain reduction!
My neuro just gave me Tegretol on Friday. I don't notice it helping, probably too soon. I seem to get some relief from Gabapentin, 900 mg a day, but not enough.
Hi cinigal. Sorry your pain is spreading. Over the course of many years, my pain has spread all over the place. Recently, my neck feels like it’s on fire, as does the inside of my throat - tonsil area, palate and tongue all on the bad side. In my case, I’m sure other nerves are involved - not just the glosso nerve. Hope you’re feeling better soon!
YES!! and the neurosurgeon looks at me like I am nuts! It feels like I have been boxed in the upper cheek and it burns and hurts ,sometimes numbing , for a few days! I am on Cymbalta..just upped to 60mg on Thursday and still not having great control of the pain. How high a dose were/are you on?
Its crazy but I have had this nerve thing for exactly 3 years. I had surgery in Sept 2011 for a MVD of the 9th (they called it atypical glossopharyngeal because I had under jaw pain and just at the edge of my tongue) Now since surgery, my throat, tonsils and roof of mouth hurt and feel "burnt". Also upper jaw and a couple of teeth hurt like the dickens. And some numbness by the edge of my nose and mouth all on the affected side. Voice gets hoarse when bad pain. Cold temperatures trigger pain. Noise,especially high pitched,piercing noise.
Another YES. Mine started as intermittent all right side triggered by lifting following surgery for a herniated disk C6,C7. At first just inner ear ringing and pain and back of throat pain. Now 17 months have past and it has moved to front of neck (hyoid bone) jaw, face (about where parotid gland is), back 2 upper molars, upper and mid trapezius. Told my neurosurgeon feels like it keeps evolving into more, he just gives me a blank stare. Pain has been continual for 12 months with drugs taking some of the edge off. Affects speech, swallowing & heartbeat sometimes. Neurologist says he does not understand the neck and shoulder pain. But if you follow the branches of the GN and know it "communicates" with other cranial nerves at their branches you can see how wide spread the pain and symptoms can be. I started Trileptal a little over 3 weeks ago-- just gaining wt and feeling tired from it. Trying to get off Tylenol#4 and Valium, but still end up taking it at least 1 time a day. Talking, swallowing and loud noise also trigger mine.
Icepick, I know exactly what you mean. Mine started just as you described. I haven't had neck surgery BUT I have 5 cervical nerve root impingements with 4 herniated disk. It was diagnosed 18 months ago. During physical therapy last year, when the therapist would massage my trapezius muscle it would cause lightning bolts in my face. My physical therapist told me that it didn't surprise her because the trapezius muscle runs from the occiput (base of skull) down through the bottom of the scapula (shoulder blade). She believes that doctors don't consider the effect of the muscles on the nerves. My GPN didn't start until a couple months after my cervical diagnosis. As you said Icepick, the nerve follows right along the trapezius muscle. Have you had an MRI for your TN or GPN? Mine was negative for any blood vessels compressing the nerves.
Icepick, does bringing your head down (like reading a book) affect your GPN?
ice pick said:
Another YES. Mine started as intermittent all right side triggered by lifting following surgery for a herniated disk C6,C7. At first just inner ear ringing and pain and back of throat pain. Now 17 months have past and it has moved to front of neck (hyoid bone) jaw, face (about where parotid gland is), back 2 upper molars, upper and mid trapezius. Told my neurosurgeon feels like it keeps evolving into more, he just gives me a blank stare. Pain has been continual for 12 months with drugs taking some of the edge off. Affects speech, swallowing & heartbeat sometimes. Neurologist says he does not understand the neck and shoulder pain. But if you follow the branches of the GN and know it "communicates" with other cranial nerves at their branches you can see how wide spread the pain and symptoms can be. I started Trileptal a little over 3 weeks ago-- just gaining wt and feeling tired from it. Trying to get off Tylenol#4 and Valium, but still end up taking it at least 1 time a day. Talking, swallowing and loud noise also trigger mine.
Goaskalice, Yes reading a book, typing on the computer, tilting head too far up or too far down. Using right arm so that area of muscles in my neck move (C6-C7 location). Mine actually started when I went to PT after my surgery and they had me start lifting (using rubber bands). Then got worse even after that area massaged. I do still have a bone spur compressing the nerve root at C6 my MRI says unchanged from prior to surgery. My Surgeon said he removed a bone spur but I guess it was the one at C7. I never knew this until a few days ago when I went to the radiology office and asked for copies of my reports. Sorry you have so many areas with problems. Hope you find some times of relief.
Yeah Ice pick, it's amazing what doctors don't tell you. It's really smart to get copies of your test results and medical records. I wouldn't wish our pains on anyone, but it is nice to have someone to commiserate with someone who understands.
ice pick said:
Goaskalice, Yes reading a book, typing on the computer, tilting head too far up or too far down. Using right arm so that area of muscles in my neck move (C6-C7 location). Mine actually started when I went to PT after my surgery and they had me start lifting (using rubber bands). Then got worse even after that area massaged. I do still have a bone spur compressing the nerve root at C6 my MRI says unchanged from prior to surgery. My Surgeon said he removed a bone spur but I guess it was the one at C7. I never knew this until a few days ago when I went to the radiology office and asked for copies of my reports. Sorry you have so many areas with problems. Hope you find some times of relief.
Goaskalice, The trileptal ended up causing severe side effects, so off of it. I went to a new neurosurgeon who just sent me for detailed MRI of neck and brain. Waiting for results. Are you finding any help. I just keep hurting more and in more areas.
My pain has increased, though it couldn't get much worse.. Couldn't believe it but there is room for even higher pain. My medical care has been on hold for 4 months since my Cobra ran out. I did get good news Friday. I was official approved for my SS Disability and my onset date is 9/2011 so I now have Medicare. As soon as the card arrives, thank God I can start going back to my doctor. Ice pick, please let me know what the MRI shows. Our symptoms are so alike. My MRI 8 months ago showed nothing, but my condition has worsening exponentially. Ice pick, I hope your MRI doesn't give you bad news but I hope it gives you some answers to what is causing you pain. Again please share your test results ice pick.
ice pick said:
Goaskalice, The trileptal ended up causing severe side effects, so off of it. I went to a new neurosurgeon who just sent me for detailed MRI of neck and brain. Waiting for results. Are you finding any help. I just keep hurting more and in more areas.
Finally got results of MRI. All cranial nerves are free of compression in my brain, No MS, no brain tumor. But they found a retropharyngeal nerve tumor. So now I will be going back to my ENT to see what that means and where to go from here.
Icepick, I'm so sorry that you have a retropharyngeal nerve tumor. I'm quite sure that your ENT will refer you to a neurosurgeon. Hopefully the new diagnosis will lead to relief of your ATN & bilateral GPN. Please keep me informed. I really care.
ice pick said:
Finally got results of MRI. All cranial nerves are free of compression in my brain, No MS, no brain tumor. But they found a retropharyngeal nerve tumor. So now I will be going back to my ENT to see what that means and where to go from here.
Just to let you know, my 2nd opinion neurosurgeon found it and her and my neurologist said it was not in their area of care and the ENT would be who to see. More than likely an ENT surgeon that has worked on the nerves in the neck and is highly skilled will be needed. They both said they didn't think my ENT would do the surgery (even though he is one of the best in my area) but that I will have to go to Seattle or some other major medical facility. The tumor is in the bundle of nerves that leave the base of the skull.
Oh icepick I am sorry. It seems neurosurgeons find answers better than any other specialty. Did the neurosurgeon tell you if the retropharyngeal nerve tumor is the cause of your ATN & bilateral GPN?
Hellocincigal, mypain startedbytheglossopharyngealneuralgiapainand thenspread tothe jaw(the top teethand bottomcheekand under theeye andfeelthe sinuses areaffected), while theright side.AfterMRI, doctors have seen afivenerve compressionandcompression ofninenerve.So I havetrigeminal neuralgiaandglossopharyngealneuralgia. Maybeyouhavethe same problemas me?It takes aMRI. I wish youless pain. With all my heartwith you.