Jaylee, I was excited to see a post about occipital neuralgia! After 4 months of pain and hearing a lot of doctors say, "I don't know what it is!", I finally diagnosed myself as having ON. And it was mainly from reading what other people said on this website. Mine started the first week in Nov. '06 when I had a bad sinus infection. I coughed violently for 2 nights, and I believe that is what started it all. (my own theory) I had a headache for 2 months, 24 hours/day, and my dr. tried everything she could think of. She sent me to a sports therapist, but that only made it worse, because they couldn't figure out what was wrong with me, and I think they did some things that actually hurt me. In fact, after my last of 6 visits there, I started the weird head & facial feelings, where it felt like my head was literally being blown up like a balloon. That continued for another 2 months, until someone on this board recommended Cymbalta for ON (Doctors found that it worked on the nerve pain in diabetics' feet, so they use it for ON.) Within 30 min. of taking it, I felt like someone was opening the end of the ballon just a little bit and letting a tiny bit of air out. I was finally able to sleep lying down that night, and I haven't had the bad "balloon" feeling since then. I still get the feeling that someone has hit me in the back of the head with a hammer (or, as you said, a baseball bat!), but not as often. My biggest complain is that it hurts when I cough or sneeze and sometimes when I bend over. (Before I got the Cymbalta, I couldn't even bend my head enough to look down at my lap, but the Cymbalta took care of that.)
I had one really good week, 2 weeks ago, so I went on vacation & did a lot of walking (first time I've been able to walk in 8 months!). By the time I got home, I had a terrific headache, so that's kinda discouraging.
I had all the tests, like everyone who goes through this. The doctors (except for my primary care dr.) all thought I was either crazy or depressed. For about 3 months now I've been taking 60 mg. Cymbalta & 5 mg. Flexeril (muscle relaxer). I've tried skipping the Flexeril, but I always end up having to take it. Yesterday I took one Indomethacin for my headache, and it is a lot better today. I went to a massage therapist twice last month, and that really helped, but we're still waiting to see if my insurance will cover that. If so, I will go twice a week for 4 weeks.
I'm so sorry you're going through this. Please let me know what you have tried - what works and what makes it worse. Without this board, I would still be trying to figure out what's wrong with me and wondering if I really am crazy!!!
Post Edited By Moderator (tysmyboo) : 6/30/2009 12:25:05 AM (GMT-6)