agree with Sleopard. when docs hit their knowledge limit -especially with all the different variations of an already rare syndrome - some docs just get very uncomfortable & frustrated, b/c they not know what else to do. so hard to start over, but agree you’ll benefit in the long run.
It is really hard when doctors treat you like you annoy them. I hope you find a new doctor that treats you with respect and caring.
I posted this diagram on facial trigger points for TN. It was located on http://www.mayfieldclinic.com/PE-TRIN.htm#.UiVBLdLijYs. Their website has been very helpful for me and is on the recommended physician list. I hope this helps everyone. It's so hard to find good info.
284-Trigeminaltriggerpoints.jpg (45.5 KB)
I too have Atypical TN. I have lived through it for almost 20 years. About 6 months ago I started to have a numb/tingle feeling in both my upper lip and the tip of my nose. It has progressed to were my lip is no longer involved just my nose. The tip, bridge and all the nerves inside seem to be in full blown TN. There are days were I will have TN pain just in my nose that sends me to my knees. My doctor says he has never heard of this before, nose pain. i am glad I can show him your post that there is someone else.
When I have this nose pain I can not talk. Tears roll down my face because the pain is so intense. I have had one migraine for 20 yrs and daily TN pain and I will tell you this nose is worse as far as short term pain…it last minutes as compared to the stabbing and thunderbolts. But I do see, for me, a direct link between stress and the number of attacks. Under a lot of stress I can have approx. 40 attacks 1 week and only 4 or 5 when stress is low.
I did have 2 Gamma Knife procedures to help my migraine. They did really help. But was not able to cut back on any Meds. The GKs just kept the migraines from bleeding thru all Meds I take and it makes my life liveable.
I get bad nose pain but drs still don’t see an infection been scoped like 8 times no joke by different drs. My left nostril hurts & I feel it deep inside. My septum hurts & my nose can be sensitive to touch. I tried antibiotic cream & some antibiotics. So going to try Doxycycline now & see if it helps. I don’t have numbness. I had a tooth extracted near my nose and 6-8 weeks later the nose pain started. My current ENT thinks it might be a low grade cellulitis but Have seen over 10 drs and no one saw anything so if it is cellulitis then holy crap I have had this over a year now!