Canagirl,

So many wise words here already. Just wanted you to know that I really feel for you right now and know from experience how hard and frightening it is when something is terribly wrong and you can't get answers. I know sometimes it is hard to hang on. For a while my motto was from one of the sailors in Master and Commander, he had "Hold Fast" tattooed on his fingers in such a way that you could read it when he was holding onto the rigging during a storm. I actually wrote that on my hands before my huge nerve surgery. Hospital staff thought it hilarious, but it got me through many a stormy time. "HOLD FAST" Canagirl. It can take a while to get answers, to get the right meds, to find the right doctors. There is despair, yes. Visit it when you need, cry and yell and gnash your teeth but DO NOT GIVE IN and stay there.

I second starting neurontin at 100 3x a day, especially if you are little. Studies show it works synergistically with nortriptyline and people get better relief from both together. I will say though that if you have been worsening since starting nortriptyline maybe take less. It does ramp some people up and can oddly cause tingling in some. I took only 25mg as my highest dose, but I am pretty small. Also keep in mind it can take 4-6 weeks for some of these meds to reach maximum effect eve though there is often relief before that.
I also second the benefit of a therapist experienced with pain and chronic illness. Mine did hypnosis and EMDR which I found immensely helpful as it approaches the work in a different way. Also try getting in the water, everyone is different and it may work for you. Try to stay calm, breathe deeply and be kind to yourself. The panic makes your nervous system more overactive - I can say this from having been there!

I hope your appointment goes well. I am sending Healing Love,
Littlepaw