I'm sorry to hear about the skull nerve pain,my Mom has been having this for almost a year and we also can't find answers to why.And if there is away to help,her.Your new to me so I'll just say welcome to the group,and hopefully someone else can give you some helpful advice.

I am sorry you are having so much pain. Do meds help at all? Are there any of the big hospitals near you that you could see if they could figure it out?

I have a dx but the "cure", should w/c ever approve it or anything like it doesn't hold a real promise of permanent fix so I really don't know what to do. On bad nights/days I think anything has got to be better than this, on better days I am not so sure.

Good luck.

I am on 28 pills per day. Otherwise I would be completely disabled. With the meds I do work a job and run a podcast to try to help others. I've had surgery at Vandetbuilt and gave been through some of the best hospitals there are but no one can figure it out. They have tried nerve blocks from every direction and some sort of nerve electricusion to try to lessen the pain with no luck. I figure if I can get through it, then many others can so I started a podcast that tries o address getting through life with chronic pain. The doctors have given up but I haven't.

Hi jspendres

I don't think at this time it would help to have a name for it---becuase it if had a name, it probably would have been stopped or lessened with all the treatment they have done to you.

Why don't you take a proactive approach and write out an article on it, naming it yourself? You could describe the symptoms, the onset, what has helped and what hasn't and what has been done to try and help it.

I know that it is totaly make believe---but, I wish we had Dr. Greg House and in one hour, all your problems could be solved. There was a great one a long time ago about a woman who had the "pork" worm. She was going through all these symptoms and they wanted to x ray it...but knew it would not show up in her brain if they did it that way. They decided that if they xray her thigh and find it there, it was most likely in her brain. They did, they gave her antibiotics and with 2 minutes to spare before the next tv show...they solved her case and saved her life.

If only things were that easy.

I am sorry you hurt so bad and you needed to post here...welcome though and, I hope you get some answers

I've been looking for a dx for almost 5 yrs so I sure can relate. If we knew what caused our pain then maybe something could be done to help relieve our pain!
Hopefully you find out soon. Don't give up going to drs and trying to find out what is going on with you.

Many Blessings,
Toni

I will consider naming it. i long to find Dr. House. Thank you guys