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

I’ve just done google search and their AI came up with the following (it’s a pretty long post but, hopefully, it may help).

It sounds like you're experiencing a rare hair condition where hair twists and knots under the scalp, potentially causing a sensation of movement within the body. This could be related to conditions like trichonodosis (hair knotting) or acquired pili torti, or even a variant of hair matting.
Here's a breakdown of potential causes and what to do:
Possible Causes:
Trichonodosis (Hair Knotting):
This is a condition where hair strands become twisted and knotted, often appearing as a visible knot or coil.
Acquired Pili Torti:
This condition involves the twisting of hair due to irregularities in the hair follicle, potentially caused by perifollicular fibrosis.
Hair Matting/Felting:
In some cases, multiple twisted and rolled hairs can appear as a minor variant of hair matting or felting.
Other Hair Shaft Defects:
There are other less common hair shaft disorders that can cause hair to become brittle or fragile, potentially leading to twisting or knotting.
Scalp Conditions:
Some scalp conditions, like folliculitis or certain types of dermatitis, can also cause hair to feel like it's moving or twisting under the skin.
Infections:
In some cases, infections, like trichomycosis, can cause hair to become twisted or tangled.
What to Do:
Consult a Dermatologist:
Given the unusual nature of your symptoms, it's crucial to seek professional medical advice from a dermatologist.
Medical Evaluation:
A dermatologist can perform a thorough examination, potentially using tools like light microscopy and scanning electron microscopy (SEM) to assess the hair and scalp.
Diagnosis and Treatment:
Based on the diagnosis, the dermatologist can recommend appropriate treatment options, which may include topical medications, oral medications, or other interventions.
Address Underlying Conditions:
If the twisting or knotting is related to an underlying scalp condition or infection, addressing that condition is essential.
Avoid Aggravating Factors:
If you have a history of scalp sensitivities, avoid harsh shampoos, styling products, or heat styling tools that may exacerbate the issue.

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.

Thank you for your support and yes… I believe the doctors are unwilling to admit that they don’t have any answers. What a shame

I did a Google AI check yesterday - and posted it here yesterday (it’s quite long). Please, do check it out as it may be helpful to you…..😊

Thank you you are very kind and caring! I did read what you found and I find a lot of the information new to me and hopefully helpful I will try asking my doctors about some of the things that are talked about I am still having problems some days are more troubling than others but I am coping Thank you for your kind words and encouragement

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!

I am so sorry to hear that you are having problems too! I have tried shaving my hair a few times thinking it would help but it really doesn’t so I’ve let it come back even though it’s not right…it just isn’t growing in correctly I don’t know how to describe it but it isn’t my hair and I still get dizzy often but I’m coping as best I am able to so sorry for all of you who are experiencing similar things let’s keep hoping someone will find answers for us! Hugs and positive thoughts!

I truly hope that the information may help you and, others suffering from the same, or similar issues. At the very least, the ‘AI answer’ proved your condition is real - and should respond to the correct treatment….😊

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

Is there a name for this issue?