My hair is twisted under my scalp…it moves down my body coming out

I know exactly what you’re experiencing and I’m so sorry. I’ve never seen it described before so thought I was completely alone. It’s as though my follicles have dove through my scalp, winding through me and twisting tightly through my eyes, sinuses, throat, and even teeth. It becomes internal and external and carries with it substances from whatever bodily system it’s winding through, (eg. snot may come out of the back of my head or breast). Beyond being humiliated and dismissed by doctors, I was locked in the psych ward for 9 days after I called an ambulance because I was choking and blacked out. I had to admit my symptoms were delusions to be released. This truly is a nightmare.

What a nightmare! I am so sorry!

I can't believe I have found others that are going through the same thing I am! Everyone I've tried telling has either laughed at me, looking at me like I've list my mind or have said it must be my nerves. I had really long hair and started noticing what looked like I was balding in certain places on my head. I cut my hair thinking I had a knot somewhere on my scalp. It seemed to be balding faster after I cut it short. I tried brushing, massaging, scalp scrubs and a Dermatologist. At times, my head felt like it was going to explode because the twisting was getting so tight. I asked the Dr if he could relieve the pressure and he just stared at me and asked if I was taking any drugs. Whatever is happening can't be seen from the outside. But I can feel it. So, I shaved my head. Which relieved a lot of the pressure. But, it didn't fix all the hair that is still twisted under my skin going down my neck, around my face, and sometimes I swear I can feel it down my legs. I don't even visit doctors with this anymore. I've been experimenting on my own because I just can't take the feeling under my skin anymore. The only thing that has been helping my situation is. I bought a pair of "face scissors ". These are those scissors that won't cut your skin but if I run them over the sections where the hair is under the skin. It cuts the hair that's twisted only. And, so far, it's the only thing that has been relieving the twisted hair under my skin. I've been dealing with this stuff for over 5 years. And, I still can't figure out how it got that way in the first place.

@meshel69 what kind of scissors are the ones you are using, and where do you get them? Can you post a picture of them?

I've been trying to put a picture of them. I can't seem to do it. But hopefully you've seen the little nail scissors? They're small like those, 3" long and have round ends instead of sharp ends. They're very inexpensive, like $3 to $6. I bought mine from Amazon but I know drug stores and most grocery stores carry them. I haven't been able to find anything else that works yet. But, be patient when you try them. It's taken me about 6 months to get most of them out of my scalp, face and skin. But it has been working for me.

I’m suffering from the same problem for 2 years.
I have a history of C5-C6 fusion and continued to have very bad headaches.
Pain clinic recommended RFA on C3-C4 which caused severe sunburn like reaction. I could not even touch my hair. Now I have hair growing across my face, in my eyes, in my mouth. It’s so irritating!

I am dealing with the same issue with medical doctors who are telling me that I am delusional.

I finally have been able to get my scalp un-twisted. Which I found was the cause of my hair twisting. I'm assuming that the reason it felt like it was "under " my skin was because my skin seemed to wrap itself around the long twists of hair. Since they were being pulled so tight from one side of my head which started pulling the other side of my head. This going to sound weird but I started peeling my scalp and skin on my body,apart to find the hair was in not under it. And yes, at times it would hurt. But as long as I went slow and was very careful not to tear at the skin, then it left no marks and I was able to get the long twists of hair out. At times I really thought I was losing my mind. And that I was just Imagining these things. Talk about patience! Depression would try and take over. But then, I'd have another break through. It's taken me over a year, working on my scalp and skin every single day. Sometimes for hours not realizing how many. Wanting to just give up and believe I'm just going to have to live the rest of my life this way. Nope, all that time experimenting, having patience and constantly telling myself this is real and we're going to fix it, no matter how long it takes, is paying off. I've been able to find so many of the twists. Some were easy, not so deep. Some felt like I was pulling a peice of my insides out. I still have a few to get but now I know I can take my time and I've gotten the hang of it. I feel so much better!! Because I feel better about the way I look and feel, my whole attitude on life has changed drastically for the good.

My boyfriend of 10 years left me when he came home and I was shaving my head.. I tried to explain how it was tickling in my ears my nose and eyes and it has gotten so thin on top .. he called me a drama queen and a hypochondriac.. amongst other lovely things..I've been letting it grown the last six months and I started noticing the same damn things.. now I have a big zit looking thing by my ear that had ingrown hair .. clump of ingrown hair ..

You are obviously NOT delusional @frustratedinflorida….as you can tell by the responses voiced here. It just that some doctors cannot admit that they don’t know the answers to all of our questions - or admit y that they don’t have the time to research those questions……