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

Posted by mimi44 @mimi44, Jul 1 5:27pm

My hair is twisted under my scalp I can move it so it goes down through my body sometimes it’s behind my eyes in my throat I gag get dizzy feel like I might die can anyone help me? Has anyone else ever had anything like this

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joansmurphy | @joansmurphy | Sep 29 5:35pm

This sounds like an absolute nightmare. Have you seen a rheumatologist?

rashida | @rashida | Sep 29 5:42pm

In reply to @mimi44 "Discs in upper spine…maybe I’m not saying it right? I think that’s what they called them….like..." + (show)

@mimi44 “C” discs are Cervical, “T” discs are Thoracic and “L” discs are Lumbar. I didn’t know all this either - someone here explained this to me. So you described them correctly.

Becky, Volunteer Mentor | @becsbuddy | Sep 29 7:07pm

In reply to @hmmartin85 "I thought I was losing my mind especially after trying to explain this to different types..." + (show)

Welcome to Mayo Connect @hmmartin85 ! I’m glad you found us. Be sure to read the other discussions here about caregiving and dementia.

heybilly1977 | @heybilly1977 | Nov 4 6:34am

I've been dealing with this now for about 7 years myself and am wondering if it's not some kind of twist internally. In 2020 I was rushed to the hospital with a strangulated bowel and underwent emergency surgery. Prior to that I had extreme pain in my lower abdomen and groin. I do not suffer from pain anymore although this troublesome "hair" has never gone away but instead become worse and more irritating. I find myself constantly trying to "pluck" it, cut it, and at my worst even tried burning it off. It feels as thoughts times it's strangling me, or I'll choke on it. It has obstructed my ability to swallow food or Medicines and generally lowered my quality of life. If anyone has learned anything more about their own symptoms I'd love to hear it. I've learned not to panic when these sensations come on but there were many times in the past where I also felt like I was dying. This issue has definitely been a challenge to deal with

mimi44 | @mimi44 | Nov 4 6:58am

In reply to @heybilly1977 "I've been dealing with this now for about 7 years myself and am wondering if it's..." + (show)

I’ve not gotten any answers or help from any test or doctors. I’m sorry that you are experiencing these same symptoms. Some days and times are terrible I know! I just keep hoping someone will find a reason and solution!