[Sheri.bealmear]

After getting RSD 2 years ago my hair
has continued to go bad. It has become
a very strange texture. It feels like fake
Hair. I've always had extremely thick hair
and it's naturally curly. It's always been
coarse, but it had life and bounce to it.
My hair held the style well. Now, it has
No life or elasticity.

It can't be styled.
It's dull and a strange texture I don't
know how to describe. I have lost 2/3 of
my hair in thickness, and I have a hollow
Bare spot on the left side. My scalp is
also extremely sore. I'm getting scared
Because I don't know how to get it to
return to its previous texture and condition.
Has anyone else had this happen and
What did you do?

[tkayewade]

Yes!!! I assumed mine was due to topomax, but my hair and nails are brittle, skin is dull. I cut my hair fairly short(chin length). I use thickening/moisturizing shampoo/conditioner. I don't wash as often to keep from drying it out more. I rarely use heat. I go easy on the product, and take vitamins. It doesn't really help. This disease takes so much from us! Maybe someone has better tips.

TK

[tos8]

Yep. My hair was very thick and nautrally had that "bounce" with waves. And now its awful! And its thinned alot. I only wash it once a week now to prevent it from getting to dry and the more i wash it the more it comes out. And i buy good products. No dying it or heating because it will get worse if you do that.

[tjack]

I had the same problem, I have found that coconut oil & argon oil help tremendously with both the texture & dryness, the coconut oil also helped heal my sore scalp. Also, I only wash once a week. My hair use to be thick but has thinned a lot. It is long so I either keep it in a bun on top of my head or braid it. Good luck, I understand your frustration.

[ginnie]

Hello, and welcome to Neuro Talk. I would like to suggest you google up Aleopecia areata. The blad spot and change of hair texture can sometimes be attributed to this condition. Aleopecia can be triggered by a virus, or something that triggers the fight to flight responce. It is where your T & B lymphocytes are called out to fight, but they forget where they are going and attack you, as a foreign object. I have this disorder. Since I was 29, my hair would fall out, then maybe 9 months latter come back in like normal. There are three forms of this condition. Aleopecia areata, aleopecia totalas, and aleopecia universalis. The first one, you will get some bald spots, and change of hair texture. It will grow back and resolve in a matter of 9 months or so. The other two you don't want, as the prognosis isn't so good about getting your hair back.
A dermatologist is the type of doctor that can DX for sure. There are treatments for it, but none that I know of that have a permanent fix. My ex had a mild form of this, got it once, and it never returned.

I don't know if RSD, or CRPS can act as a trigger for aleopecia. In my case, I had a severe virus and a hosptial visit. On the ER table, my scalp hurt, and I wondered at that time if something wasn't wrong. I was DX'd at Mayo, as I actually had the worst form of the disease, and followed with a trial study for 9 years. My hair comes and goes over the years.

I hope that you don't have this disorder. I just wanted you to know one possible explaination, and suggest you go to a dermatologist to get some information. It has been years since I looked into new treatments, so there may be something by now that helps. I wish you all the best. ginnie

[needhelp13]

This sucks. I know because it is happening to me. A member here told me to use Nioxin Shampoo from a salon. I am trying it right now

I do take Topomax but it has never does this. It did thin it but with the CRPS it is so bad. My nails are shot. My hair is shot. I am at a loss.

[ginnie]

I sincerely hope that your hair loss isn't a result of your immune system. Google up what I wrote to Sherri. The message above yours. A dermotologist can for sure tell you what kind of hair loss you have. That is really the only way to dx it. I will keep you in my thoughts and prayers. I have had this problem since Iwas 29 years old. I get my hair back for a number of months, then it goes again, always repetes this cycle. In my case it is my immune system, that engages the fight to flight responce, and my body doesn't know how to shut that mechinism off. I am not 62 years old, and I wish to heavens this didn't happen to me either. My hair loss is triggered by a shock, like an illness, or surgery, or even a extreme emotional trauma. I will be thinking about both of you. ginnie

[tkayewade]

I tried biotin. It doesn't seem to becoming much.

[Sheri.bealmear]

Thanks Ginnie!! That information has been helpful. I think I might have Aleopecia areata. I'm going to go see a dermatologist. I'll say prayers for all of you. It helps to hear from other people suffering through the same issues. People, even close family, who aren't going through this don't understand how devastating it is.