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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. He implanted a motor cortex stimulator in 2001, with no effect.
I have discussed all common treatments for Trigeminal Neuralgia with him as well as with Alana Greca, the nurse who coordinates the TNA support site, and I attended the regional TNA conference in Nashville last May.

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. I have suffered from constant low-level pain since a major operation in 1984, for example.
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 knows of procedures or treatments outside of those commonly used for Trigeminal Neuralgia which might be of help.
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.

WesW
5 Responses
Avatar universal
Did you also post this on the expert forum?

My doctor prescribed Lyrica - a new drug.  Have you tried coming off your other stuff slowly.  It sometimes takes time to get them out of the system.

Pixi recommended Tegretol

Have you been using moist heat for some relief?  Either microwave a towel or get one of those heating pads that somes with a sponge just inside the cover which you moisten.  When my pain was at it's worse I kept the heating pad in bed with me.

Do you think they could use a laser to cautorize the ends or something?
Avatar universal
I'm sorry that you are suffering so much.  I was in similar condition due to occipital neuralgia, but my pain finally responded well to some newer meds.  In the process, I discovered that long term use of narcotics actually worsened the pain for which they were originally prescribed.

Please ask your doctors to try Lyrica and Keppra. These meds work in entirely different ways, so they can be combined to increase their efficacy.

Best of luck
Avatar universal
Hello, I have and have had ATYPICAL TRIGEMINAL NEURALGIA for 6 or 7 years now.  I have waves of constant burning and pressure on the left side of my face.  It simultaneously moves from the upper teeth and gums to the lower ones. I had an MVD operation and numerous proceedures (too many to name) that tried to kill the nerve and even had 2 stimulators implanted to try and reduce the pain.  I have tried every drug out there and the one that worked (Trileptal) caused me to have danerously low sodium levels that caused me to end up in the hospital.  In January of 2007, I had Gamma Knife surgery and had absolutely no relief until about 6 months after the proceedure.  It was so wonderful (after I finally believed that it was working after so many false hopes), and just like the pain left, it came back slowly but surely after 3 or 4 months.  I wasn't totally pain free but enough that I was able to reduce my pain medication to a fraction of what it was and began to get my old life back.  I was wondering if anyone else has had Gamma Knife a 2nd time and did it work again at all or for a longer period of time?  Also, I was wondering if anyone has had the nerve completely severed to relieve the pain and was there irreversable numbness that came with that?  Thanks, Ellen.
Avatar universal
Since you have tried everything,why dont you try homeopathy. They make claims of curing this problem. check it out
Avatar universal
I feel like I was reading from something I wrote myself. I was an RN and had been sitting at my desk on march 03 when all at once it felt like someone put a spike thru my eye. I had had 4 flexible sinus surgeries and one invasive one called caldwell-luc.  it was a few months after that when I had my first bad episode. I had 2 more caldwell-luc within a year and a microvascular decompression.  I have had many procedures since then. nothing worked. I have been to the univ of Pitts. They said any thing they did would make me worse. The mvd spread the pain all over my skull. It started on the left v-1 and v-2. Over the last 10 years it has spread to both sides. riding in the car any length of time is very painful. Talking much or loudly is painful. I take topamax and baclofen. Oxycotin and percocet for pain. God bless you and you and maybe they will come out with something soon.
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