Twisted Hair Syndrome Or Trichotillomania

Twisted Hair Syndrome Or Trichotillomania

The condition of the Twisted Hair System known as "Pili Torti" is often confused with Trichotillomania. Pili Torti is a condition where hair grows in a twisted fashion which causes irregularities in the hair growing out of the hair follicle.  

it is presumed that perifollicular fibrosis that causes rotational forces that distort the hair follicle. The condition is associated with underlying conditions such as malnutrition, anorexialupus, inflamed scalp conditions, and hearing problems.

Pili Torti is a rare condition and is called rolled hair or circle hair. The first line of defense to determine if you have "Twisted Hair Syndrome" is a visit to a dermatologist, an exam of the hair under a microscope, and a scalp biopsy.  

Noelle Salon has a Facebook group and below is a description of a person who believes they have "Twisted Hair Syndrome." 

"Question— does anyone have experience with twisted hair? As in all your hair is twisted together in random different directions, meaning underneath it all are layers of matting due to the tight twists? Sometimes it feels like wearing way too tight of a hat because of it.

I’m still waiting to get to the doctor for a diagnosis. It’s been plaguing me for so long but I was afraid to ask for help because, well, it’s Trich and I’ve had so many healthcare providers think I’m “crazy” for my dermatillomania (which turned out to really be trich anyway)

The problem is that no matter how much progress I make untwisting, it all twists right back up and sticks to my scalp.

It’s twisted so tight that it cut into and under my skin, so that makes it even harder not to pick.

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, or perhaps trichonodosis “knotted hair”. 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? It is impossible to know without a doctor's diagnosis, but perhaps what she is feeling is the bizarre hair that grows back after pulling. When the hair follicle is traumatized from pulling or even chemotherapy, new growth will be of a different texture. It is often coarse, curly, and even white.  

Also, Trichotillomania sufferers tend to pull hair in areas where cowlicks exist, and near hair growth patterns. The hair feels different, there is often an obsession to pull it out and then the cycle continues.

Trichotillomania is a "BFRB" Body-Focused Repetitive Behavior" it appears in pulling hair, eyebrows, skin picking, and nail-biting. The behavior can be life-altering, and impossible to live with.  

Many of our clients with Trichotillomania have prevented the pulling behavior with a combination of therapy, SSRIs, and a barrier such as a hair topper. It takes more than just one approach to stop pulling, as with any type of "addiction," a day-by-day mindset is the most successful.

Hair Loss background

With Alopecia Areata, fungal infections, other autoimmune diseases, thinning hair by Trichotillomania which removes hair follicles by physical means. At Noelle Salon, we cover the various approaches to hair solutions to treat hair loss, female pattern baldness, balding spots, and other conditions to which you lose hair. At Noelle Salon, we focus on hair growth techniques. Hair systems and hair extension maintenance is part of the journey while wearing them. For Trichotillomania, as our hair grows they both will loosen, and service is required. The difference between a hair system and hair extensions for Trichotillomania clients varies based on the location of hair loss. 


  • I’m curious if this individual was ever diagnosed? I’ve been plagued with the exact same symptoms for 3 1/2 years now. It has even changed my appearance and has me isolated in my home. My hair gets so tight in places that it causes headaches, earaches, and toothaches. Doctors give me vague diagnosis (all different and incorrect) meanwhile, none have done ANY sort of testing on my scalp. Perhaps it ends up being something silly, but there is also possibility it could be cancer. It has me so upset untrustworthy of most health care providers.
  • Im experiencing this same issue everything she said is exactly everything I’ve gone through past 3 years. Doctors think I’m crazy so I quit goin haven’t seen one in 3 years so ahy information or help would be greatly appreciated as I basically have given up on life

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