Since I am new to the forum it won't allow me to submit a link yet, but a report on the USC Keck School of Medicine describes exactly what your medical report says it is. Anyone who wants a link to this page, contact me through the forum and I'll get a link to you.

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?

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

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

Hey,
I have been diagnosed with atypical trigeminal neuralgia. I am 34 now and have had this condition for 17 years. The majority of my pain is in and around my left eye. There is even visible evidence of this because of the dark circles surrounding the left eye. My left eye is extremely sensitive to wind, light and lack of sleep. The pain is never ending. Sometimes the pain is stabbing. Sometimes the pain is burning. I am currently taking nothing for the pain. I am sick and tired of medications and have decided to "gut it out." I have not taken a medication that actually takes the pain away. I have surgery scheduled with Dr. JHO within the next few months. Wish me luck. They actually did find a compressed blood vessel that is probably causing the pain. I will keep you posted to tell you if the surgery is sucessful or not.

Thank you for posting. I'm all for failing medical management before submitting to surgery but there seems to be a lot of people jumping at it early on. My pain began as atypical, and is now a mix of classic and atypical. I found your observation of the medical community thinking of changing the continum very interesting. Anyway, thanks for sharing. Ellena

I wish you the best and I do hope that you'll continue to post. What surgery are you going for?

Ellena

Hi:

I noticed that there area some very old post from people suffering from this disorder. Are you still active on this site. I would love to hear from you or any others who have this disorder,

Thanks

Shaughnna

HI guys,

Hate to be joinging the party here but I have V1 neuralgia as the result of an ongoing HSV1 viral infection. Yep HSV1 the herpes simplex cold ssore virus that apparently can live in your trigeminal nerve. And to think I have never had a cold sore in my life. Anyway some extensive dental work I was having caused the virus to come out. I have terrible burning pain along the left v1 nerve.

Shelley, we always hate to welcome people to this club, but there are a lot of caring people here willing to listen and share what they can, when they can. At least you are lucky enough to know what caused your TN. In my case, I don't have any idea and neither do the doctors. Are you treating with meds and are you seeing a neurologist? EE