Scalp is covered in white waxy substance that my hair is stuck under

[VVSFrick_1314]

So I broke out with a fungal infection all over my body well my scalp was then infected and the whole ordeal was so weird and nothing I ever seen or heard of before it left me so confused . I can’t find anything online about it which is so frustrating cause I have no idea how to treat this . Anyway it started out with somewhat of an itchy scalp with these tiny little dots all over that felt gritty like sand and were mostly around the crown of my head . The 2 days later the dots were gone and I had these dark little hairs shooting straight up all over my scalp which looked so odd well later on that day I noticed my hair line looked like it was shaved off and within an hour it was even further back with more of my hair all from the front of my head missing and looking like it was shaved my hair appeared thin all over like my hair was falling out . I then for some reason decided to take tweezers and pull at the little hairs shooting out of my scalp and what I never was expecting or thought even possible was to pull a full stand of my bright red dyed hair from my scalp !! I started pulling more and more and thick long tuffs of hair were gliding out from my scalp with hardly any effort and I started pulling the hair from my hairline that vanished earlier and when I pulled on them the hair was back again and I had my hairline back and my thin hair was back to being thick but it wouldn’t stay and my hairline was back to missing and looking like it was shaved . So I pulled at the little stubs again to get my hair back this time filming it so I could show anyone because it was so insane I couldn’t believe what was happening. All night I sat in front of the mirror playing tug of war with my hair scared that I wouldn’t be able to keep my hair permanently. The next day after passing out from doing that all night I instantly ran to the mirror and saw all the missing hair from my crown and went to pull it back out but this time there was some resistance and wasn’t gliding out with ease as the night before . Later on that day I could no longer pull any of my hair out and it was like a normal scalp if I pulled there was pain and pulling any harder would rip the hair from the root . I was devastated I was now stuck with bald patches along my entire hairline in the front of my head one patch going back pretty far with no way to cover it up and my right ear completely exposed with no hair to cover my ear . Within a couple of days I noticed my scalp looked really white and felt almost waxy . I decided to wash my hair and use my husbands tar shampoo. When I got out of the shower and dried my hair I could really see how white my scalp was and the weird film it had over it . It literally felt like candle wax I then pulled on the little stubs of hair coming from the missing patched and with some pulling my hair came out I was freaking out again I started pulling more and more hair came out it was now like it was trapped under this sticky feeling substance. So now I realized my scalp was encased In this thick white waxy sticky film and that a lot of my hair got trapped underneath it . There are even some baby hairs that are coming from my face more than my scalp cause it’s skin and I could actually see the fine hairs trapped under my skin but with some pulling can pull them out . Which makes this weird substance on my head so weird cause it’s obviously thick enough to completely cover tuffs of hair without making them visible but thin enough you can’t see it and it looks just like your normal scalp and skin so I’m extremely baffled. Also every time I pull the hair out of the sticky substance it ends up disappearing again . I’ve been showering a lot and using the tar shampoo and also purchased different fungal shampoos and every time I do the scalp becomes less sticky and now it’s very dry with little flakes of dandruff but barely that much and the hair is still sticking underneath. I was hoping if I got it super dryed out it would start to flake and release the hair but it hasn’t worked and now that it’s dryer it’s getting harder to get the hair out . I am so confused I have no idea what I’m dealing with  or even how to treat it I’m scared I’ll never get my hair back and have bald spots all over and thin hair . I’m even starting to get big bumps now from it becoming infected because of the hair being trapped because these are big wads of hair not one little strand . Around my hair line it looks like I have huge thick veins running along my head when it’s actually hair you can actually rub my scalp and feel large bumps and can feel all the hair underneath it’s so weird . My family is so freaked out they can’t believe what’s going on with me we all tried looking endlessly online and can’t find any help I’m getting so tired of this and just hope I can cure this I also noticed the roots of my hairs are all white now like this fungus that’s all over my scalp is growing up the shaft of the hair now . I hope I can get some answers about this and some serious help . Thank you
And just to clarify there are no scales with this it’s completely one piece and smooth it looks like my scalp but in certain lighting you can see whatever this is on top of my scalp and can tell it’s not my actual scalp but a weird film covering it .

[Rbrom64]

This is exactly what is happening to me
I’m losing my mind over this I went to my PCP and had test for autoimmune but was told I didn’t have that

[Newlifeash18]

I am experiencing these symptoms right now as well!. I have these black waxy hard strands on my scalp...my hairline looked like it was shaved off...my hair is twisting up in this weird pattern. When I come my hair...it snaps back down like elastic...I have also discovered this thin film coming my skin. Whenever I get the film off, hair is found underneath it. It is all on my face and when I rub what I thought where acne scars, turns out to be hair from my scalp on my face. I am freaking out and nobody believes me!

[Ts1202_]

I believe you! Same thing here. 4 yrs now.

[Imnotalone131022]

Me too!

[Sassystacie]

Oh i belive.  I've been having same issues for 2 years. Had 3 ft long hair.  Had beautiful blue eyes with long eyelashes had good skin my hair I shaved off bald a year later I finally have some hair that has the same crud in it as when I cut it off my skin appears to have a film of some sort that's sticky will not come off I don't care what cleaner you use I've tried every trick in the book I've done culture I've done apple cider vinegar Green Tree medicated shampoo you name it I've done it all nothing cheers it I have been flagged as a crazy I have lost friends I have been accused of being a druggie when the whole time I have been very sick I spent hours a day just trying to get my hair out from my scalp it just keeps growing over it and then if you get it out it's so wet it'll never dry it doesn't absorb water I've been to two dermatologists for five doctors been thrown out of ER thousands and thousands of dollars later no diagnosis I even had a scout biopsy said it was consistent with dermatitis I have no red scally patches. Fungal testing was done with the biopsy I'm not sure wh. I have requested for blood test or or scrapings to see if there's a yeast in what strain and how to treat it I don't know why but they won't do the testing my eyes ooze white liquid out of them it's very painful it builds up pressure behind my eyes half the time I can't see. I do believe it is a biofilm of some fungi I too also have a swimming pool that got very bath water warm which would allow for anything to grow I'm also water haul I live out in the desert I need to see about testing the water that I have to haul to the home I hope we find a cure people I have gone downhill so fast in 2 years I don't look anything like I used to look I look terrible I feel terrible people criticize it make you feel even more terrible I can so relate may God help us

[Newlifeash18]

So I don't know how safe it is...but I finally just said F it. I shaved my head  completely bald and I washed my hair with the fish tank cleaner and algae growth stuff and it has worked wonders. My hair is growing back thicker and faster than it ever has! My skin is glowing and I feel like as if I have gotten my life back! I truly feel beautiful again. All after a 10$ fix at Walmart.

[Denato777]

Sounds similar to my condition.  Fly strike from large black fly, loud buzzing noise.  Dealing w this and cannot get help from Dr’s.  Would not even known this fly was in my hair if not found next day in my towel, after washing my hair.  Dealing w this on my own, no help from physician’s. Even ER would not check my scalp, stayed across the room and this is unbelievable.  

[Imnotalone131022]

ER here helped me like I was delusional. That it was all in my head

[Spacecrazy0023]

I found out that my dermatologist (2nd, sent there by the 1st to "get a second opinion") diagnosed me with:

1. Delusional parasitosis,
2.Somatoform disorder (psychosomatic)

Covered her bases alright. Imaginary, and if not, still subconsciously my own making. Wtf? And, a derm RN qualified to diagnose psych now? Silly.

Meanwhile, almost 2 years, and nothing. Just getting progressively worse!!

[Lotus1101]

Just went to an internist today and she tried to give me something to slow my heartbeat! There's nothing wrong with my heart. They're really quick to give psych meds for something they can't see, but when my hair is practically glued to my scalp andy neck is swollen on one side - they can't see anything therefore they can't prescribe any treatment. This is the same doctor that originally gave me ivermectin for a few days. I told her I think it started to work so maybe we need to keep treating. So she gave me doxycycline which did nothing. I'm trying to get a referral to a parasitologist in Texas at Bayer School of Medicine, they have a parasitology wing. Apparently an internist can't do a referral for this type of doctor. Makes no sense to me

[Imnotalone131022]

I've suffered now since 2016

[Pleasehelp666777]

Same thing has been happening to me for 4 years ... hair twists and knots itself up on its own - I spend at least two hours a day trying to untangle my hair, some days I make it worse & some days I manage to untangle most of it however the moment I stop, move or sleep (sleep is the worst) is springs back up into a tangled mess ... I thought i was just balding however whenever I spend hours untangling I can clearly see my hair is still all there ... feels sticky, also wax coated & all my hair gets stuck in my face ... like a flat line from the top of my head to my neck, when it flares up it disfigures my face, makes me appear wrinkled and my skin is like orange peel ... then when it’s a good day the hairs stuck in my skin comes out (which you can feel when the hair lifts off the skin) and my hair starts to untangle .. then my hair tangles itself back up & gets trapped again in my skin ... quite literally everything you have all explained is the exact same with me ... I have been to 50 doctors, dermatologists & NONE of them have been able to help. They think it’s all in my head & even though there are thousands of us suffering the EXACT SAME BIZZARE symptoms they still refuse to see we are legitimately suffering.
I have lost everyone but my closest friend ... my family don’t believe me, work doesn’t understand ... It’s so lonely suffering so much while having to convince people you are not going crazy.
My hair twists and pulls so much my head is in agony, it twists my neck, shoulders .. I feel hair and debris in every inch of my body. I just want to look like me again.
Please someone help us ... I honestly can’t go on much longer, I just wish I could make someone listen .. I just don’t want to be here anymore

[Skinquicksand]

Oh my god, you described my exact situation. I have searched the Internet for months now trying to look for any mention of regular head hair just getting sucked into facial skin. Even wjen I try to wear my hair in a bun and wrapped in a toael at home, they still end up submerged in my cheeks and everywhere. I especially have trouble with the crease behind my ears but the entire ear as well yoo. And the creases in the front of my neck and a single mole I have on the middle of my neck. There’s always hair getting wrapped around the mole and getting stuck like a hose being bunched up and hastily thrown back onto the hose stand on the side of a house.

But still, the cheeks drive me the most insane. It’s like there will be little nodules at the end of my hairs in my cheeks and appear exactly like pimples but i can immediately tell if they’re actually the end of hair strands stuck under my skin. And when i try to feel for the direction/lead of the hair strand’s originating folicule on my scalp, my family was always upset at my “picking at my acne obsesovely”
But no matter how I explain it, they can never understand that i’m not picking at acne, and I’m not picking compulsively. I can feel the strands under my skin, especially when my movements tug them from different directions under my skin.
And it feels like bugs crawling under your skin every single day, but people just brush you off as being psychotic.
*sigh* im very sorry to hear that youre suffering from the cruel reality, but I’m glad to see that my experience is not alone by this crazy confession.
If you ever find an accurate diagnosis (if they even is one) please dont mind to share the answer with me on here again! I’ll ditto

[Ts1202_]

I feel you. I started taking all my hair off. It's weird I'd shave it all off and immediately more weird hair would poke through scalp. I have it from head to toe now. Through my skin. I have blurry vision and bad headaches. I use to not go out the house without doing hair and makeup.  I had long beautiful hair...not anymore though and cant do makeup anymore either. This sucks!  Will we ever have our lives back?

[Imnotalone131022]

Exactly what I've asked myself...

[Pleasehelp666777]

OMG mines the same !! The cheeks and everything, it is so uncomfortable and the same spots flare up every time, they all feel connected and I can often see lines in my skin all connected with small red pimple type marks, I think it’s a the skin having a reaction to a foreign body (being our hair) .. behind my ears & all over the lobes are the worst. temperatures seem to flare it up a lot i have found …
I also have resorted to wearing my hair only in a bun (it’s the only way I can wear it now) no matter how tight it is as soon as I sleep they creep back .. I spent 5 years obsessively researching it to no avail, the only thing I found that helped were forums.
I also have a freckle and mole on my neck and on my cheekbone which Ives always thought is related to the issues, they always raise and seem to have hair wrapped around them & 100% same the marks on my cheekbones always were connected to the scalp hair and when I would pick I would see the whole single hair lift off my skin in the direction of the acne and line

And omg seriously the bug feeling … I paid $500 to have a pest guy come through my house because I was sure there must have been bugs hiding in the walls or something, it literally made me go mad. It’s a constant crawling feeling and I often get random nicks and marks on my arms near my wrists … and ofcourse you start talking about bugs crawling on your skin which only helps reaffirm people’s thoughts you are going crazy or they think you are on drugs !

I have recently seen a new dermatologist, I got seen by the top doctor who started the company (well respected) he gave a diagnosis of trichodynia (cutaneous dysesthesia syndrome) cutaneous being skin and the disorder gives symptoms of burning, stinging and itching which can be exacerbated with stress (makes sense given the emotional distress this causes) anyway the doctor explained to me the disorder trichodynia causes pain  to the skin, causes hair to break and fall which I believe causes reactions to the skin and pain to the skin. My hair is also stuck underneath the scalp skin causing the hairs to sit and fall in a non natural pattern which I think causes the skin to react when touched and get stuck underneath the skin because the skin is reacting and fighting. But I also think it’s a hair follicle or overaccumulation of skin problem because I have issues with my eyebrows, eyelashes & the rest of my body hair (even feels like the hair is stuck all the way through my eyes it’s crazy) my ears also flare up.

I was prescribed minoxidil (sublingual tablets) twice a day & bicalutamide (this was to help with the intercranial hypertension the hair twisting caused) once a day. Was expensive and about was about $200 for 7 weeks worth of medication. I was only on it for a month and the hypertension one helped a lot, I didn’t have the minoxidil long to know (my progress got interrupted by a family emergency) i will give you guys an update as soon as I go back (I’m currently back on the waiting list) … I hope that helps or at least gives a basis to go off ..
Also sorry by how late I’ve this message gets to you, I gave up on trying for a long time it just gets too much to keep getting nowhere as you all probably know xx

[Pleasehelp666777]

The blurry vision and massive headaches yes !!!! The bicalutamide  would help you for this.
It also affects my hearing and I’m starting to notice vertigo

[Pleasehelp666777]

The blurry vision and massive headaches yes !!!! The bicalutamide  would help you for this.
It also affects my hearing and I’m starting to notice vertigo

[Pleasehelp666777]

I used to get complimented on my hair and skin everywhere I went. My hair is nothing now, it won’t grow past my shoulders, and the only way I can wear it so it doesn’t look like a twisted mess is in a bun. My skin is also ruined, the texture and way it pulls due to the hair is just insane.
I have also refused to twist or touch my hair and skin for months, this does not help at all. It gets worse no matter how much you maintain but I refuse to start touching it again as it turned into an obsession for me.

[htxhk77]

My hair does this, too. It will coil and paste itself UPWARDS against gravity sometimes, and trap more hair underneath. I can get it loose, but it seems to “react” and re-coil itself as soon as possible.

[Vshines]

Please has anyone figured this out?! This is the first thread I've even found that is related and exactly like my symptoms

[Julietteg6]

September,2023 J. Goodrich in C.T. OMG! The last
few posts have described me exactly! I have been going through hell the last few years with this crazy thing as well. Doctors think' I'm crazy and try to commit me and my head hurts constantly from my hair pulling so tightly and being stuck under my scalp. Sometimes I even think I'm crazy but I know this is real. Hopefully, someday someone will believe us and figure out what is going on. The weirdest thing is when I look in the mirror at my skin I can see it changing and moving right before my eyes. Does this happen to anyone else?

[Spacecrazy0023]

I've tried Albendazole (parasite stuff), but it doesn't seem to make too much of a difference.   I got Dermarest Psoriasis, that seems to work better than anything else. Also a combo of rosemary, lavender, oregano and jojoba oil. Neem oil is great in general, as is triphala. Turmeric mixed with jojoba or coconut oils.
I was also prescribed doxycycline and some steroid, but would rather not use the steroid due to side effects.
As for scleroderma, that's a possibility, but not my issue, as I was tested for it earlier this year (different medical issue, though now I'm convinced it's all related).
Yes, the docs treating me like I'm nuts definitely sucks...

[Lotus1101]

I'm thinking it's a t least one worm/nematode that's coiled and may be sticky so it's taking our hair with it. I've heard that they gmo"d nematodes which may explain why there's no getting rid of it. I also think I'm getting sick as a reaction to the parasite. I spray apple cider vinegar at night and let it dry a bit then sprinkle diatramethious earth. My hair seems to be in one big swirl around my head but it seems to be slowly coming undone. My hair was down my back but now it's above my ears

[Ts1202_]

I thought the same as you in the beginning  ..a nematode but no...I have done every test and they show nothing. It took me until this year to figure out that this is a beetle insect. There is no test for it and these beetles use mimicry to hide themselves..its their defense mechanism. I also believe there is a black mold along with it and it has a connection to morgellons.  I take activated charcoal. I also use bentonite clay on my skin to pull this crap out. Oh and Epsom salt baths. But I think it will continue to start over and over in our body until the adult beetles are dead. The infective larvae stage I think is the hardest...

[Imnotalone131022]

I have scratched and dug into my scalp for hours, and a couple times I had a single dead oval dark brown buggy  Looked the size of a ric grain but with legs

[Theens]

I have seen these bugs as well, quite frequently now actually. Vinegar, while being helpful in moving the cells away from an area, also seems to bring these bugs to the surface. I can’t stomach seeing one of them pop out anymore so I try to avoid vinegar unless absolutely necessary. But I do use a spray of ACV and filtered water on my glasses. If I don’t use it my glasses fall off and hair is twisted all over the arms. But the worst part is that it’s as if the arms are a path for it to travel with. I developed deep creases from my ears to my eyes and on my nose where my glasses sit I now have an internal opening for the hair. My nose, which was perfectly fine before this, looks like it’s been broken 10 times and never treated by a “dr.” I can’t blow my nose even though it’s  constantly f red inning it dripping. I I can feel a rubbery strip from the corner if my mouth to my nose thst nothing will penetrate. Honestly, after all the experiences I’ve had with drs concerning this, it probably wouldn’t help to see one if I did break my nose in reality. They don’t examine anything and I wonder how many people walk around with lice or conditions like it because a dermatologist decided from 10 feet away that because they couldn’t see anything then nothing existed.

[Theens]

Also, I don’t know if anyone else notices this but my phone gets covered in skin flakes and various other disgusting things when I use it. I  was replacing phones every six months or so until I finally realized it was blocking areas of it. I have a brand new phone in its box because it won’t enter the number I tap for the passcode. It just brings up a different number or doesn’t redd add pins at all. After carefully experimenting with it, I now coat my glove with peroxide or vinegar and that keeps any areas of contact free of this crap. If I set my phone on a paper towel (which I don’t advise using paper anymore than absolutely necessary) sprayed with peroxide or vinegar it all rises to the top where I wipe it with a screen cleaner. I always get the extra warranty but with the amount of “accidents” ranging from an obstructed port needing replacement to it “slipping” out of my hand I’m afraid I will probably be rejected soon from further coverage.

I believe my condition is quite advanced at this point and to be perfectly honest I’m just counting the days now because I just want to be at peace. It will come to time that showering is one if the most painful events of the day. And least productive. I dread it because I know what I will be going through. The pain of adjusting to the excruciating pain of dry skin and the various infections everywhere when I am done is a torture I think about all day. Once the film has adjusted and is hardened that particular pain is gone but it’s replaced with terrible burning all over. And just like that, magically all of the sores and areas of  infection disappear.  

That’s why everyone thinks I’m crazy, they can’t see anything. And I lost all credibility when I first became aware of this. I was so confused and they all got tired of looking at something I was “imagining” because they couldn’t see it. I am an atheist but I do wonder at times if I’m in a hell created by the universe. Maybe I won’t ever escape this.

[Lotus1101]

Beatles can carry filarial worms that carry the bacteria causing Lyme or a form of Lyme disease

[harsh2000]

you are not crazy
Alkalized hair is the cause
Use acidic shampoo
Wash your hair and use conditioner everyday
use hair vinegar