Great to hear from you. No, you are definitely not alone...although you are the first person I have encountered who also has ON! So much of what you say rings a bell...frequent trips to the doctors and the ER...worried about a brain tumor...yes, yes. The blank looks on the doctors' faces in the ER when I described my symptoms still bother me. Even one of the neurologists I saw didn't know what ON was. The weird pain, tingling, itching, pinpricks, etc. in the head are so hard to describe. Before I finally got diagnosed, the anxiety regarding whether the symptoms the sign of some horrible brain condition was overwhelming at times. Yes, I also would occasionally feel the tingles/pinpricks elsewhere on my body, and on the side of the face near my temples, but not very often. I had a lot of itching on the top/back of my ears though and once in a while one of my ears would turn deep red.
Have you found any swelling on your neck near the injured nerve? I noticed a swollen patch at the very top of my neck behind my left ear while my symptoms were bad. The swelling went down vanished as my symptoms went away. Even though my symptoms have been mostly gone now for over a month and a half, that area is still a bit "sensitive" to the touch. My doctor thinks that is where the original nerve injury was.
That is interesting to hear that the steroid injection helped you. I will keep that in mind if my symptoms return. I have read that nerve block injections can help too. Basically, my experience was that nothing but time and patience helped my symptoms go away. I tried Tylenol, aspirin, prescription Alleve, hot packs, cold packs to no avail.
It is frustrating trying to glean information about ON on the web, because there just isn't much there. One interesting thing I have discovered is some doctors have linked ON to bad posture and walking and exercising with the head down and forward. Somehow, bad posture causes the occipital nerves to be impacted and injured. That rang a bell with me because I have always slouched a bit and haven't been good about good posture when standing, running or sitting up. Needless to say I have really been working on my posture now. It is all so weird to be doing this for the first time at age 40, but anything is worth a try to keep the symptoms away.
Thanks again for writing and sharing your experience, it was very helpful to me. Feel better soon and let me know how things are going!
(P.S. holmesla, do these symptoms sound familiar?)