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

Has anyone figured out what this is yet,,,my sister has the same thing did anyone get bit by a tick

Yes finally someone i can relate to this is horrible my dr cant even figurenout whats wrong with me

I also need help i get horrible headaches

I have been dealing with this for 5 years now too and im tired sometimes i cant sleep i get headaches and im constantly messing with my hair trying to un twist it i cry im depressed and ive cut my hair really short and am and no longer feel pretty my best quality was always my hair now i j7at feel ugly help help hel0

It is awful I am so sorry and keep hoping someone will find an answer to help us! I have been letting my hair be short even though I too loved my long hair I also wear head coverings…scarves and bandanas help me feel a bit better about my looks

This could be helpful:
Trichonodosis is Knotted Hair
https://noellesalon.com/blogs/hair-color-style/twisted-hair-syndrome-or-trichotillomania
This is paragraph is at the bottom of the blog

I've done so much research over the years but the closest I've come is pili torti “twisted hair syndrome” which is super rare, perhaps related to congenital deafness, or perhaps trichonodosis “knotted hair” or even congenital hereditary hypotrychosis. There are definitely knots under the skin too, and it affects my whole body. I think. Definitely tunneling hairs under the surface and they follow a trail of cysts.

My body could also be Hidradenitis suppurativa. I'm obsessed of course because just knowing what it is would give me some peace of mind. Possible frontal fibrosing alopecia."

I am sure you can feel her frustration, but is she suffering from pili torti, Trichonodosis, or knotted hair?

I have the same problem and nothing I’m doing is making it go away. At this point I’m considering shaving my head which is so disheartening

I continue having problems with this and trying to find a solution or a reason or a connection to someone or something.after reading through all responses I’ve wondered if anyone thinks it might somehow be related to Covid either having covid or getting the vaccine?….also before all the twisting painful hair problems I had recently used a drill to hang metal shelves and pieces of sparkling tiny fibers (similar to fiberglass fibers) appeared on and under the skin on my arms and hands…could this be somehow related?

This started for me about a year ago with sore blister bumps showing up on my scalp, which then seemed to migrate around and sometimes were large golf ball sized bumps. After no help from doctors or dermatologists, I’m finally starting to unravel the twisted mess. Nizoral shampoo (2% ketanozocole), Vichy Dercos shampoo, tea tree oil, NAC protocol, and NUCCA chiropractor. I’m not sure what of these things is helping the most, my theories include that it is fungal infection with hyphae, overgrowth of demodex mites, or scalp tension from misaligned cervical spine, or a combination therof. After two months of patiently unravelling the twisted hairs that caused my scalp to start to fold in on itself, I’m starting to feel better. Hope these tips help some of you

This is the first I’d ever heard of this, but a quick internet search helped me realize how MADDENING this must be!
Here’s what I found, in case it helps anyone.
Twisted or matted hair under the scalp, sometimes called Plica Polonica or Plica Neuropathica, can be a condition where hair becomes irreversibly entangled, forming compact, hardened masses. This can be caused by various factors, including psychological disturbances or, in some cases, a genetic predisposition.
Elaboration:
Plica Polonica (Plica Neuropathica):
This condition is characterized by tightly packed, matted hair that is resistant to detangling. The hair becomes irreversibly twisted and entangled, often forming a solid mass that is difficult to remove.
Acute Hair Matting:
This refers to a sudden, severe twisting and matting of scalp hair, often forming a tightly packed mass. It's also known as Plica Neuropathica, Plica Polonica, or bird's nest hair.
Causes:
Psychological Factors: Plica Neuropathica is more common in individuals with psychological disorders or those experiencing significant stress.
Genetic Predisposition: Some cases of Plica Polonica may have a genetic component.
Mechanical Factors: In some cases, the matting can be caused by excessive rubbing, scratching, or combing of the hair.
Defective Keratin Production: Pili torti, a condition where hair is abnormally flattened and twisted, can sometimes be associated with defects in keratin production.
Diagnosis:
A physical examination is typically sufficient to diagnose Plica Polonica or acute hair matting. In some cases, a biopsy or hair pull test may be performed to rule out other conditions.
Treatment:
Treatment typically involves gently separating the matted hair with a combination of warm water, oil, and a gentle scrubbing brush. In some cases, a professional hair stylist may be necessary to remove the matted hair.
Other Related Conditions:
Trichonodosis: A condition where hair develops knots on the shaft.
Pili torti: Twisted hairs characterized by flattening and twisting of the hair shaft.
Loose Anagen Syndrome: A condition where hairs in the growing phase (anagen) are easily pulled out of the follicle.