Yes!! I am still dealing with almost the same kind of thing. It seems like the rest of hair "follows" this one place one my scalp. I remember way back in that spot of my head, there was what felt like a zit like bump. I just put it off for just that reason. That was over 6 yrs ago. That spot now is a huge like golf ball size of what seems to be wound up hair and oil and I'm sure some left overs of all the products I've had in my hair. This has been the hardest to get control of. For some reason all the rest of my hair seems to be attracted to that spot. So, Im super scared to even let my hair grow to much. I know now from experience that as long as I have that "knot of hair" there, the rest of my hair will get tangled from it. And, if its long, getting tangled in that will be another nightmare! I'm not sure I could even deal with that again. You said you could feel it tickling in your ears,nose and mouth. Thats exactly how it started out for me. I thought I was losing it. I just let it go and didn't investigate it. I really wish I would have kept being curious back then. I keep thinking maybe I could've prevented over 6 yrs of mental anguish, physically hiding, hating myself and thinking I was hallucinating. I mean who really knows what could have been or what could be prevented. Until that one doctor (researcher) looks into this problem. They have to make it a "medical thing" before any other doctors will even take us seriously.

I am so sorry to hear that others seem to be having similar experiences and symptoms. I keep hoping one of us will find a solution and answers!

Has your doctor said anything? That sounds so terrible, I have great sympathy for you.