In tears

General General TN & GPN (Old Site)
1

This is kind of an extension/rehash of a reply to another member’s post, so if you’ve already read it please forgive the repetion.

I find myself at a total loss. One of the best TN Docs operates here in my hometown of Portland at OHSU. The neoro dept did not accept my referral. I ended up with a neuro at the Oregon Clinic who essentiall told me that if my ENT, dentist and oral surgeon all agreed I had ATN, and since I got some relief from tegretol (however I can’t tolerate it), then that was good enough for her. She gave me a prescription for gaba, starting at 900mg daily, and left the rest up to me and my nurse pract. This worked for awhile but I soon had breakthrough pain, then consistent pain. I visited this site and gathered info re ramping up my dose a bit, which I brought back to my NP. Same result. I am now taking 2400mg of gaba and again experiencing pretty bad and regular pain. Im not saying the gaba is a failure, because my pain is definitely better with it than without, and half a percocet is taking some of the edge off the rest. But, now what? I am not at all comfortable with deciding for myself WITH ABSOLUTELY NO GUIDANCE FROM ANYONE IN THE LOCAL MEDICAL COMMUNITY WHO KNOWS EFF-ALL ABOUT MY CONDITION, what my next step ought to be. I have an appt Tues with my NP to discuss things and get a referral to a pain doc?? I love my NP but she’s out of her depth, and she obviously can’t keep handing me perocet.

I feel really overwhelmed and alone right now… it doesn’t help that the pain is right there to remind me that I am not receiving adequate tx…please, if anyone has any input for me??

Best to all, S

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Hi Serena, I am so sorry that you are having such a hard time. I am glad you have joined this site, it is a group of amazing people! While we can't give you medical advice, I hope you can be encouraged that you aren't alone. Dealing with pain and feeling the frustration of dealing the medical field is something many of us are very familiar with. Relief does come, the right people to help you does too. It just didn't ever seem to come as soon as I would like. I see a team of pain management specialists. The ones that take care of me are very compassionate and caring. I could wish that I had been referred to them 5 years ago. What I found was, is that while I am waiting for other opportunities, (surgery), my pain is being managed better. I love my PCP, but she had reached the end of what she could do. There really isn't one of my Drs. that know as much about TN as I do. They really would have to specialize in it to have read near as much as I have. It is a means of coping that I research when it hurts. I don't always understand what I am reading but I read it anyway, lol. Blessing to you and hope you feel better soon.