occipital neuralgia

I am soo glad that I found a forum to talk about my head pain.  Sometimes I think that people think that I am a hypochondriac.  My pain started overnight about 3 years ago.  At that time I couldn't move my head in any position even to lie down.  I had to sleep sitting up for two weeks with a rolled up towel to support my head because I could not move my head in the slightest position without extreme pain.  After an X-ray, MRI, Anti-depressant pills, chiropractor manipulating my neck, Physical therapy, Steroid injections, massages, a neurologist finally diagnosed my pain as occipital neuralgia. 

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!!!

Nancy

Nancy, thanks for the info about Cymbalta. Maybe I'll ask my pcp about it. I was on Prozac for a short while but got horrible nightmares so I quit it. I also use Capsaicin the smallest dose, the one that you can roll on. I put it on my scalp and neck. It burns but sometimes it helps. thanks again

hi, this is my first time on here.  I have been suffering with pressure like, stabbing , lightning pain in the top of my head since 2005. it make my eyes feel like it has pressure behind them, and the lightning pain goes on both sides of my face.  Sometimes when i get upset or cry it hurts , and sometimes it makes me not alert. The only thing i do to relieve my pain is to go to sleep or lay down.  I have been to the ER, and to my family doctor; they diagnosed me with questionable TMJ, but they seemed to not treat me well.  They only presribe me 500 mg of Tylenol and ibuprophen. They seem to shun me off. I rarely take prescription narcotics because they do not prescribe them to me, but it seem to take the pain away for a short period. I am 28 right now, and my activities are limited. I have a previous tear and osteoartritis in my knee, and Now I also have a L5-S1 lower back injury and they haven't did a MRI or Cat scan of my back. They did do a Cat scan of my head and they did not find anything. i am in pain from my head to my foot and it is driving me CRAZY!!!! THEY WANT DO ANYTHING HERE WERE I LIVE, and i guess it's because i don't have any medical insurance. i just feel like giving up.  what should i do.