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Atypical Trigeminal Neuralgia
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Atypical Trigeminal Neuralgia

I am a 38 year-old man who has suffered from chronic facial pain since childhood, and am currently diagnosed with Atypical Trigeminal Neuralgia.

Current care: I have been under the care of a Vanderbilt neurosurgeon for the last six years, Dr. Peter Konrad. In addition, I am under the care of a pain specialist at UAB, who has tried all of the current medicines used for my condition, such as Lyrica.

Description of current pain: The nerves of 1st and 2nd branches of my trigeminal nerves are over-sensitized, the right side to the point where I am effectively homebound. I spend about half my time in moderate to severe pain, in spite of the fact that my sinus tissue is normally in excellent condition.
My pain level changes almost hourly, and can spike due to either sinus swelling or surface irritation, even extremely minor swelling or irritation.
Decongestants and salves can be effective at reducing the pain if taken or applied soon enough, but my situation has deteriorated to the point where sleeping in the wrong position or going out to get groceries on a dusty day can leave me in severe pain for days, until the resulting irritation or swelling has completely healed.

History: In 1990 I had an obliteration of my frontal sinus cavities, which had been infected for years, and which had seeded the frequent sinus infections I had suffered from for most of my life. Unfortunately the operation left me with neuromas and possible myelin sheath damage at the incision sights. I had over a dozen other sinus operations prior to this, which, together with the infections, also traumatized the trigeminal nerves.
In 1999 I had the Trigeminal nerves clipped, which eventually resulted in severely increasing the oversensitivity of the 2nd branch.
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Thank you for submitting your question.
I will answer your concerns to the best of my abilities, but please be informed that I am unable to offer a diagnosis based on your history and list of symptoms.
I am extremely limited in not having the opportunity to perform a full neurologic examination on you, nor am I able to review the pertinent imaging.
This is solely for educational purposes and should in no way be a substitute for a formal evaluation by a certified physician.

To begin, deepest sympathy for the pain you are enduring.
From your story, you have endured a lot -- more than anyone should have to.

It is obvious that you have a very ATYPICAL case of trigmeninal neuralgia -- one that started in childhood and was apparently exacerbated during sinus surgery.
From your description, much of the surgery that has already been performed appears to be the work of an ENT (Ear-Nose-Throat) surgeon.
To be frank, as a neurologist I am not familiar with these techniques to clear the sinuses so I cannot go into much detail about the cause of the trauma to your nerves.

Again, as a neurologist we offer medical therapy to alleviate pain.  
We often use Neurontin or Lyrica for neuropathic pain.
We will also use Carbamazepine, Baclofen, and Phenytoin.
The effectiveness of these medications varies and depends a lot on the individual and their specific type of pain.

To be honest, I think that you are quite beyond entertaining simple medical management.

I highly recommend that you see Dr. Joung Lee -- one of our world renowed neurosurgeons who actually specializes in Trigeminal Neuralgia.
He will be able to discuss whether you would be a good candidate for surgical correction (e.g. MVD--microvascular decompression surgery.)

You should also continue to see a neurologist and a pain specialist.

Hope this helps,
JKL, MD


5 Comments
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Avatar_n_tn
Here is some additional information, since I had to abbreviate my initial post due to the character limit:
In 1999 I had a pair of neuromas removed from the obliteration operation, and later had the trigeminal nerves clipped where they emerge from the cheekbone. The clipping provided a few months of significant relief until the nerves grew back, leaving the area of the 2nd branch far more over-sensitized than it had been previously.
In addition, the over-sensitized area continues to expand, and recently I have started to experience pain in areas and from activities that never caused pain as recently as a year ago.

Medication: I have been forced to turn to narcotics to dull the pain, but the only ones which I are effective and tolerable, Fioricet, Lorcet and Mepergan, have lost most of their effectiveness. My G.I. tract stays inflamed due to the narcotics to the point where I can no longer increase the dosage.

The combination of these factors has left me in desperate circumstances, which is why I am searching for any physician or center which uses procedures or treatments outside of those commonly used for Trigeminal Neuralgia.
Any help you can provide or doctors or centers you can recommend would be greatly appreciated, as I am on the verge of finally losing my life-long fight.
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Avatar_f_tn
See a PAIN specialist, other doctor's do not get it!!  Methadone in a low dose gets rid of the pain and also decreases the neuological stimulation.  Going on Methadone was a tough choice but when you get to the point your brain is telling you, I can not take much more of this, it is time to do something! Also try clonazapam just .5 mg at night and .5 mg in the morning.  Life does not have to be painful, you just have to find a doctor that gets it...that is the difficult part!!
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Avatar_n_tn
Well, as I said in the initial post, I have been seeing a pain specialist at UAB. I spent most of '04 on Methadone, with awful results, though I am glad it worked for you. I also tried clonazapam a few years ago, too, with no positive effects.
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Avatar_m_tn
Have you tried Keppra?  It works by preventing nerve synapses from coming into the intimate contact needed for release of neurotransmitters. I sympathize with your pain, as I have endured nearly 30 years of chronic occipital neuralgia, with the pain changing to constant 9 out of 10 since a botched surgery in 1999.  A combination of Keppra, Lyrica, Cymbalta, Lexapro, and Suboxone has knocked my pain down to 5 of 10 for the past 4 months.  I wish you well!
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