Thanks for the add.....i feel so lost

Thank you for the add it takes me a little time to respond and type so bare with me my eyesight is not good, and so is my thinking trying to find the words to say is real hard. I live in NC i had decompression at DUKE, dec. 2010 i still have so much neck and head pain and i feel the doctors have giving up on me. They put me on neurontin and pain meds, and im also on Psych. meds. and HBP, and thyroid meds, there is so much going on and i just feel lost and alone, im not good at assertiveness and do not have an advocate to help me, things seem to be progressing and i just do not know what to do, or where to start, i know i need to find a doctor that will listen and search for what other problems are going on as the doctors right now are just pushing me to the side and with pills, i cried to them i do not want to take anymore meds, i just want to find out whats going on, im tired of taking neurontin and percocet and just feeling so tried and in pain, im not giving up but its real hard as to what i should do, i dont want to get worse than i am its already just too much. im sorry for whining tonight i feel so helpless i just want someone to listen. thanks for adding me here i look forward to meeting everyone and making friends and hopefully give me some more support to find out what i need to ask or do. Thanks again Ward


I am so sorry you are going through such a hard time. I wanted to tell you that I had terrible experience with Neurotin. It made me incredibly depressed. I felt hopeless and thought my whole family would be better off without me. It also made me soooo tired. They kept upping my dose telling me my body would get used to it and it would start helping me and it never did. By the end i could barely open my eyes. I had to taper off and those feelings went away. I'm not sure if that's whats happening with you but it's worth looking into. It's incredibly frustrating when no one is listening to you and you are in pain. We are here for you.



I am so glad you joined this group. It is a wonderful place to for support, information and guidance. I would be lost without these great people. I am having a difficult time also with my NL and NS. I have finally come to the point where I am starting to stand up for myself. I have been pretty backward and just listening to what they tell me it is or what I need to take. I had decompression this past December. Things haven't gotten much better.

I have/had issues with Neurontin also. My NL swears by it but after upping it several time, I have had enough. It does not help me at all! The last time they upped me about 900 mgs a day....It made my facial pain WORSE!

Chiari is so difficult to manage and even more difficult to find a good doctor that will listen and help. We do have a doctor list on here. I am from PA, so I do not know of any NLs or NSs in NC. But you could post a discussion on a reccomendation for one in NC. Again, the people on here are very helpful. We are all in the same boat and want to see everyone feel better.

There are lots of times (sometimes a few times a day) that I feel like throwing in the towel and giving up the fight and just living in pain. Then I get mad and that sparks my questions and searches for answers. Keep on fighting. I know very well that it is hard, but eventually you will find someone that is going to help. We were all given this life because we are STRONG enough to LIVE it!

Hope you are having a better day!