I have Tn/ATN, left side, intermittent. Dx 2010 by head/neck specialist in CA, reaffirmed by Standford U.
Since that time I have been seen by Dr. William Cheshire at Mayo CLinic, he performed full neuro work up- he confirmed ATN/TN, but refused to discus treatment options beyond the typical mediations, which he documented that I do not tolerate. His answer was "I don't know,deal with it." I also have had a neurosurgery consult at Mayo, but based on MRI reports I am not a candidate.
I now live in WV and am in search of a specialist...but I am not sure *why*... It seems that the the only few things that bring me even close to relief I have been repeatedly denied: PRN narcotics, ketorolac, and valium as an anti-spasmoidic. This combo was successfully administered in CA by an ER doc and has been the best combo to date. I have asked for two literal pain pill doses per month for "really bad attacks" and been told "no" several times over. I cannot even get ER relief in some instances, despite carrying my documents into the ER.
I cannot take:
tegretol,
lyrica,
neurontin,
any form of antidepressant (I have been advised by neuros to avoid it at all costs due to paradoxical reaction)
I am on baclofen, which does help slightly both as a prophylatic and occ as an abortive slightly. I regularly schedule neck/body massages, OMM, stretching, diet, vitamins, etc- still only helps some.
I also need dental work, but you understand my fear....
I am not sure what to do/ask for/suggest/pursue for treatment. I also suffer from other chronic pain conditions, hence- I am EXHAUSTED.
Boy, I feel for you. Seeing a specilist and having him say "deal with it". That's not right at all. I've had a MVD for TN1, but still have TN2 symptoms and starting a year ago have had ear stabbing pain that has progressed, plus this weird scalp pain...I'm thinking "how can so many nerves be affected?". When I saw a specialist he immediatly said I had GN, but after the MRI he said I should go to a pain clinic, even though he said surgery before. My local neuro has not had much to add, help-wise. I saw her new partner two days after a really bad attact of ear pain and she did give me a prescription for Tyl#3, I'm sure will never happen again, on the label it said take 1 every 4 hrs. I told her you've got to be kidding, that won't touch my pain. All she could talk about was antidepressants,most I've had myoclonic seizures with. So when I had the next really bad attack, I took as many as I needed to put me to sleep. I'm not looking for narcotics on a regular basis, just when it's really bad. I'd rather find a cure.
I'm going to the facial pain conference in San Diego next month and hope to learn something that will help. Sorry I can't help you, only empathise.
What I did to get better…realized mayo was not the fastest or best for me
Google. DR KEN CASY…IN TRENTON MICHIGAN
you can email him…his office and he will ask you to mail your records
And by email will asks you some questions About your pain type.
He is the number one , longest active running TN guru… He teaches around the world… He will tell you if you are candidate for MVD.!
I flew from Missouri 2 years ago…and he took great care of me
I got off meds…and am 97% pain free now…many here have used him…and around the country for decades.
While you get all that set up…call your reg, dr…tell them immediate prescription for lidocaine face patches…works for many…if inside mouth hurts…ask for lidocaine mouthwash…
Kg and Emily
Not sure if this is an option for either of you but I recently had a peripheral nerve stimulator implant. I too had an MVD that helped for TN1, but not TN2. The PNS is working wonderfully well on the TN2 pain.might be worth looking into.