Help! This is my first post. Just diagnosed with GN and in such severe pain. My doctor said he has never treated this before and is searching for another doc to refer me to. I live in Sarasota, fL. Does anyone have any docs that have helped them that are close to me? Any advice at all is appreciated.

My advice is to stay on top of this Pamela, keep surfing the internet for the subject and hopefully for you a doc in your area will turn up. Search for things like the Florida (or St. Petersburg or Tampa Bay) association of neurologists and neurosurgeons, and make contact with members asking if any are familiar with treating GPN.

Good luck!

If I remember correctly there is a Mayo Clinic in Jacksonville.

Hi, I live in Stuart Fl on the east coast. When I was searching for a Dr. The of Dr. Ryan Glasser has a location in Sarasota. 5831 Bee Ridge Rd.: 941-■■■■■■■■.

I was diagnosed with GN 6 years ago.

I take tegretol and gabapentin. I take 2 tegretol and 3 gabapentin. per day. It has controlled it but for the last 4 months I have had milled pain and some severe pain. I use an ice pack on my neck when I get the severe pain. Hope this will help

Thank you so much! I will contact him.

First of all, I wish you the best of luck finding an appropriate doctor in the Sarasota area. Secondly, remember you are not alone in your pain, most all of us have experienced this condition to one degree or another. Thirdly, I just want to state that my neurologist, whom I trust beyond a shadow of a doubt, happens to trust Tegretol..He has me on this and Cymbalta daily. He has not seen anything work better, specifically, than the Tegretol. Now I know we are not here to give advice about medicine but I do believe it helps to hear what other sufferers are on and what may be working for them.

Once you have found a doctor and you are comfortable with him (or her), make sure you check out all your avenues from the different medicines to Gamma Knife Surgery to Micro Vascular Decompression and so on. Just keep your mind open, research as much as possible and again I wish you the best of luck.

Merry Christmas!


Hi Pamela,

Please be aware that what works for some folk can be a trigger for others - check out the discussion on triggers and it may give you an idea of somethings to avoid..

all the best,


I've been there with the food thing, this is horrific and I feel for you. But I think you maybe in a good spot with this diagnosis. You gotta move as fast as you can.

In the meantime, my opinion would be trial and error with meds sooner than later. The diagnosis sounds like a great start, but in the long term even if you get a surgery that is effective, this will take some time and you need as much quality of life and ability to eat as possible now.

If you can find any kind of medication that helps, it should really in the meantime. I went from an all warm liquid diet, weighing less than 130 pounds as an adult male, back to solid foods, solely through medication (cymbalta and valium) and put on a good 10 pounds. If you can't eat, a good thing to look into is blending food and like "Ensure" shakes. I survived on them for multiple years. The worst part about them is they are expensive, but they have enough nutrients you can survive, and they can be stored outside the refrigerator so you can drink them warm (not a great taste, but was necessary for me).

However, my second bit of advice is, in your pursuit of medication, many medications alter your brain/body in really significant ways both through dose and duration. I notice missing cymbalta within a days, and a class action lawsuit was filed against the manufacturers for misleading consumers about its withdrawal effects. Valium is even worse, the worst experience of my life was being thrown into withdrawal while simultaneously dealing with constant attacks.

So if you aren't finding significant success with a medication, try to discontinue it before you get 'too hooked' as this could lead to complications in trying other medications. For some reason, there is a special classification for 'narcotics' but in reality all brain functioning modifying medications cause your body to adapt and become dependent to some degree or another.