Mark, Don't be PO'd that no one has mentioned the OTC stuff. All of us react differently and have different resources. I would be interested to know how your wife does once you add the other OTC products you've mentioned. I know I tried capsacin before, on my foot, and every time it got wet, it reactivated the pepper. Does she experience that? Please keep us posted.
EE

OH YEAH, since she uses it on her face, she has gotten in her eye. It gets very hot when wet. That is what we try to do on occassion as it heats up the nerve endings. She describes it as "burning" the nerve endings, even though it does not really burn them, just super heats em up. Waiting for the Spigelia, we do not know if this is workable as the condition does not have a cure... will let you know.thanks..

Mark

Core9,
I am a brand new member, I get it in my right eye, cheekbone, nose, and top teeth. I am still in the process of getting diagnosed. I just wanted you to know that you are not alone with the V1 nerve thing, and maybe we can keep each other updated as things progress.
Best of luck, and a minimum of pain!

I had a head operation to remove a benign tumour (meningioma) about 7 /8 years ago after the operation I was still leaking spinal fluid from the operation site and out down through my nose.Unfortunatly at the same time in hospital I contracted herpes simplex in my right eye which then travelled up into the fluid around my brain.Big panic times as I became extremely ill ,but being a good ex marine I survived but was left with an extremely light sensitive eye and bad head aches down my right side of my head and face which of course my quack didn't really accept as being true.
Anyway after nearly 10 years I have been put on gabapentin and for the first time in years I am pain free, even the aches and pains that I experience through having hepatitis c seem to have abated so praise the lord and pass the ammunition
Aye Addie

Ron, I am one of the rare V1 TN'rs. 90% of my pain has been in my forehead. My pain is typical TN. Usually if feels like I am being stabbed with an electrified ice pick. I have also felt plenty variations of the pain in my 14 year struggle. I started getting the pain in my eye a month before my mvd. I have had a mvd and gk, but still suffer. I have been hurting alot more the last couple years in my eye nose and eye socket, but the forehead is still most prevelant. I have had some, but very few pains in the other two branches. Any questions let me know.
Will

Since June of this year I have had severe eye pain - no redness, no vision problems, no other signs of an allergy. I've been to the opthamologist several times and had an MRI of my brain and face with negative results. I have had this for 2 months now, and sometimes it gets better at night. I used to get neuralgia in my face probably about 10 years ago, and it would usually last days. This eye pain has lasted 2 months, and was so painful at times I missed work and couldn't drive it hurt so much to have my eyes open. And just 2 days ago the pain stopped finally. I had put blackout shades on my windows, and also started taking Lamictal (already prescribed for me for my Bipolar, but which I rarely took because of the weight gain issues.) I don't know if that's coincidental or was actually helpful. I also went to an acupuncturist, but of course by the time the appt came, the pain had stopped. My brother told me about this kind of neuralgia, and thinks that's what I have. I was just wondering if anyone else had something like this that affected both eyes and lasted as long.
Thanks, Claudia

Hi, I'd like to contact you to see how your pain progressed and see if you were ever diagnosed? If you get this can you try to contact me? I'm not sure how these forums work as I am new...but my symptoms are like yours.

I've always had it were I've had dental work toward the back of my mouth/jaw on the right side, but also in my right ear. But recently, I've had some strange bad pains in my nose and once (thank goodness) in my eye area.

Like I said...recently, I have some sharp shooting pains in my right nostril. An ENT said it was related to TN or ATN.

I also had a headache/migraine from "you know where" one night, mostly on the right side. I almost went to the ER. The very weird thing is that my right eye, drooped a tiny bit after that. I think that was related to TN or ATN. Thank goodness, it hasn't happened again. Scared me to death.

I use a compound cream with Gabapentin and other things in it, on my right side 4 to 5 times a day. I now put a little bit of the cream on top of my right nostril 1 or 2 times a day. Voila! Better.

Before getting this cream, I would use Capsaicin Cream. I burned myself many times. Also, found tiny heating pads that I believe skiers use...they heat up chemically and tie them to my face.

I take a med in the same family as Amitriptyline by mouth daily and also use a compounded cream. I've had good luck with this combo. Other meds I tried, ripped my stomach apart and gave me horrible side effects.

A great website to also try is www.livingwithtn.org.

Can't sleep, tongue burns, lightning bolts to the left side, no sleep for three
nights in a row, been through 5 dr,s they all are guessing, the meds don't
work, they aimed and fired with the gamma knife AND MISSED, they think
I'm made of money. Right now I'd give anything for 8 hours of sleep. Any
suggestions for sleep that might work tonight?

My Tn started in 77. I have V1, V2 (L). The spontaneous pains are now gone, for 10 years, but the eye movement and usage pain remains with light sensitvty, soreness, etc.
My docs first said, and then some after the Dx and surgical proof, that I needed a shrink (my father did too but that's another story.)
I have a birth defect that resulted in dozens of extra blood vesseks in my brain. Some vessels were wrapped around a part of the brain. That caused the pain. Unfortunately, after the first surgery, a decompression, not an MVD, which worked, including stopping the eye pain, the pain returned 3 months later. (The vessels had apparently grown back.)
I have had many surgeries including an MVD done by Peter Jannetta, My face was paralyzed as a result of that surgery. I am currently with an experimental brain implant.
Please exhaust your medical options before turning to surgery. If you do decide to go that route please read everything you can, and talk to a lot of people about their experiences with the various procedures, before making any decisions.
(The first chapter of my book is online. It gives a good description of the onset and what happened after in trying to get a dx. It won;t let me put the link but if you would like you can find the first chapter excerpted at Amazon or Xlibris, Google A PAINED LIFE, a chronic pain journey and you will come up with a click for the book.)

Many of the people I have talked with over the years do not have what is considered the "typical" symptoms. At one meeting I attended a few of the docs talked about changing the definition so that it was a continuum from trigeminal neuralgia to atypical facial pain to anaesthesia dolorosa (phantom pain - secondary to surgery. I actually have all 3, typical tic, atypical and the AD from other surgical intervention.)
leej