Feeling frustrated

General General TN & GPN (Old Site)
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This month makes a full 3 years since my atypical face pain started.

I've been through 3 neurologists, 2 ENTs, pain management, 2 orthodontists, TMJ specialist, and 2 neurosurgeons.

Currently I only see a psychiatrist....my neuro kicked me to the pain clinic who kicked me to the psychiatrist.

I had an MVD 1.5 years ago that didn't work. 3 months ago I removed my wisdom teeth to rule them out. I've had 5 MRIs with contrast, 3 CTs, x-rays through the mouth to the upper spine, an EMG test(electric shocks to measure nerve function), lumbar puncture, every blood test possible.

And yet I'm basically where I was when it started. I even went to the neurosurgeon who did a PNS unit for a patient on this site! And he said it wasn't pain from TN but some rarer thing they originally diagnosed called Tolosa-hunt syndrome and nothing he could do. He said go back to the ENT. I went to the ENT he said it's not an ENT problem!

Out of the 3 hospitals I've been to, 1 says it's tolosa-hunt, 1 says it's definitely not tolosa-hunt and is TN, the other had no clue.

Currently I take 200mg nortriptyline and 600mg effexor and it's not cutting it anymore.... The neurologist who sent me for MVD said there's nothing else he can do, and sent me to the pain clinic and didn't schedule anymore follow ups. The pain doctor said I was lucky to get any relief from meds and there's nothing that can be done. He gave me a book and referral to a psychologist....

I'm now thinking a neuro-opthalmologist would know more about the nerves/structures around the eye than the people I've been seeing? I also asked for a referral to a rheumatologist who I found as a co-author on a paper about Tolosa-hunt syndrome.

My problem with tolosa-hunt as a diagnosis is the pain didn't go away with the treatment which it normally clears up in days! Also it came on over months, gradually getting worse, where most of the cases I read about are in days and weeks. Currently the inflammation from THS is completely gone, so technically I'm normal, but in agonizing pain constantly every second that every medical professional completely discounts.

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Wow… Glad you have checked in here! I wonder if you have checked in with RED Recently…such a vast amount of research he has!

Are you still able to work? Is your girlfriend still by your side?

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I am sorry you're not feeling too good...I was wondering how you were getting along... There is still Amitriptyline??? Are the pain mgmt doc's giving you anything in the meantime? to help? Someone talked about the steroid shots one can get for Occipital neuralgia... Have you heard of those? Maybe they can offer some relief... ??

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good evening shindig. i am so sorry to hear that you are still struggling with this beast. i understand that it gets very discouraging. my mvd is sept of 2013 was also not successful so i really do get it. i have two wonderful neuros and one is a neurological ophthalmologist. i developed some convergence insufficiency after my mvd and now have retro bulbar neuropathy. sometimes i wish i still thought i had tired eyes. more info comes with a price so be careful what you wish for.

the constant pain must be so draining for you. i have no doubt you are perfectly normal; we all are. we are just desperate folks seeking to be pain free. stay strong shindig. i am praying for answers and relief for you.

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Lee, I’m so very sorry and feel your frustration …in this day and age it’s RIDICULOUS that people who are suffering are being passed around like this and NO ONE is saying " hey, let’s work as a team of specialists to figure this guy’s situation out" !!!

Ugh!! No, instead they just keep passing the buck…and people are left to suffer AND advocate to the extremes for care and attention while suffering.



I’m not that familiar with THS but I did research it once when you mentioned it…my memory is shoddy, but did you not at one time have steroid treatment? Things didn’t improve did they? ? What were the results of your Lumbar puncture? I wonder why the NS says THS not TN?? Based on what? Is it simply because of a failed MVD??

What kind of Neuro says " there’s nothing else I can do?“

Do you have a family doctor who can work with you to get to the bottom of this by referrals/ prescriptions / follow up / more tests …??



I’m really sorry 3 yrs on your still struggling, I can only commiserate my friend, I’m still suffering too.



Last Monday I emailed my Neuro as my pain crisis had been ongoing for so long and intensified…he had referred me to an Orofacial Pain specialist a month previously, my appointment was for December… He ended up calling her and asking her input and she had me come in that very day…I didn’t expect anything as no one really knows what to do next…I showed up in tears with extreme repetitive shocks, hot pockets to my face and before I could utter a word she asked me to point to where the pain was…and immediately she administered freezing in two places in my mouth. OMG, I was pain free 100% for the first time in over a year!! ( I was frozen but wow what a relief) she basically said what we ALL long to hear …” No one should be in this much pain and for so long, Now we can talk and this temporary freezing might help break the intensity of the pain cycle."

She is an ANGEL.

It did break the intensity…I cried like a baby, not from the pain as per usual but for the kindness of this woman.

We’re actually discussing botox now, my appointment in December was for this discussion…as I’ve tried everything and then some…and I’m still in high levels of pain. Still not back to work ( it’s been 3 yrs) and mostly home 24/7…



Lee, unfortunately we must continue to advocate, of course I can’t get freezing everyday, ( I wish) but now I’m considering botox , something I was very hesitant to do in the past…first step Lee, is finding someone to be on your team and advocate with and for you. Regardless of “what” is causing your pain, you need pain management, of course the “what” matters for proper treatment in the long run. You’ve already been given the run around and this needs to stop ! Someone needs to run the gamut of tests and sort through the vast field of neurology, ear, nose, throat, rheumatology and all your previous test results and help you figure this out. If you don’t have a family doctor doing this for you, find one!



So sorry this is such a long reply, I’ve just gone on a tangent…it’s so unfair!

Know that I think of you often and send you all the positive thoughts I can, I pray things turn around for you quickly…

Huge ((((( hugs ))))) , Mimi