I am so excited that I found this forum! I don't know if I have ON or not, but the symptoms sure do sound like what I'm experiencing. It all started the first week in Nov. when I had a bad bout with my sinuses. I coughed violently for 2 nights, and I remember how bad it hurt to cough. After a week, all the sinus symptoms left except the headache - and it's STILL here! From that time on, it hurts to cough or sneeze or bend over. In Jan. I had 2 weeks of physical therapy, with the dr. thinking it was something in my neck. But it was much worse after the 2 weeks. In fact, after my last session I had my first episode of tingling, weird head things going on. (All they did in therapy that day was heat and the electric impulses on my neck) It felt like someone was blowing my head up like a balloon - it kept getting bigger and bigger, until I honestly thought it was goint to burst! Very scary!!
Since then I've had an MRI on my head and neck. The only thing they found is osteoarthritis (which I knew about) and bone spurs on my neck. But the neurosurgeon said my neck looked like any other neck my age. He thought I was either crazy or depressed. One of my triggers is bending my head just slightly, like when I'm writing something or bowing my head for prayer. And when I told him that I was really hurting from filling out the form in his waiting room, he suggested that often when we fill out a form like that, it reminds us of how bad we feel and that makes us feel worse!! (Thanks for caring, Doc!)
When my symptoms are bad, I can't lie down. That's when the "balloon-blowing-up" symptoms start, and I have to immediately get up. The only way I can sleep then is sitting up, and one night I found that I couldn't even rest my head against the back of the sofa.
I've read that an MRI can't detect it if it's ON. Have y'all found this to be true?
My family dr. (actually, she's a nurse practitioner) is willing to try anything and will investigate until she finds what's wrong! Can you give me a particular website that would be helpful for her? I don't know if what I have is ON (I've also looked up "cervicogenic headache"), but it's exciting to know that other people are experiencing something similar to me! (Sorry, I don't mean to rejoice in your pain!!!)
If it is ON, do you think that "violent" coughing (MY terminology) could have started it? And could the electric impulses from the physical therapist have made it much worse?
Please don't stop this thread - I need to hear what you all have to say!!!
Thanks so much! Nancy