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Comment by Joy on January 18, 2016 at 9:37pm

sMJ - I take 4 mega stress tabs (B complex), one milk thistle and 2 adrenaplex and either 1 or 2 curcumin a day.  After I started these I stopped all the hair loss and have not lost any more since the initial fallout - I say that but am not sure that it wasn't falling out earlier than I noticed it.  I have about one third of my eyebrow   I check in on the site occasionally and noticed that some had said that they thought retinal creams were not being metabolized and I cut those out.  I had about a two inch area by maybe a half inch of the LLP that just did not want to leave and had read that some of the woman had had lymphatic massages.  I did them once a week for a month and now have done them every couple of weeks and all of the LLP is totally gone.  Everyone thinks I look fine but I have no idea what caused it or what stopped it - which is a little scary!  Nobody seems to get the fact that we all know it is there or should I say not there!

Comment by MJ on January 18, 2016 at 9:11pm

Joy, I think you may be the first I have heard that has reached burnout. How long did you have FFA for and how much loss did you have? What vitamins?
MJ

Comment by Joy on January 18, 2016 at 8:26pm

Sallylwess please look me up Joy as we have similar hairloss - everyone in the medical community thinks this is environmental - mine has stopped - no more hair loss than normal and some regrowth - very slight - I have started to perspire again which I really had not paid attention to the fact that I had stopped - the LLP is finally gone - I still get occasion itching and am trying to figure out what triggers it - it is all so bizarre - the only thing I have done different than most was the vitamins that I took and still take - so who knows if that is what stopped or not - I am going to follow your blog

Comment by Luisa on January 15, 2016 at 1:06pm

Sallylwess thank you for this blog spot. It shows me once more how much our stories are similar.
I believe genetic pattern and environmental poisons are the root of the disease and the stress make it burst. After three years I am experiencing skin diseas in all my body and face, irritatiofizzn on my armpits. I fell my scalp and face fizzling when I eat certain kinds of food as fat cheese junk food meat etc.
I admire your courage. Nice to have met you.

Comment by ammie on January 15, 2016 at 9:36am

sallylwess, thank you for writing that fantastic blog post and for raising awareness for our condition. 

Comment by sallylwess on January 14, 2016 at 12:52am

Ladies, I wrote a blog post about my hair loss journey.  You can read it here.  It took me a long time to go public with this condition.  I do so now to raise awareness.  http://sallysbloggingspot.blogspot.com/2016/01/hair-journey-of-loss...

Comment by Maz on January 14, 2016 at 12:22am

I'm not alone because my 37 year old daughter has exactly the same hairloss as I have. Weird. And, I'm sure we have the same condition for different reasons. She is going to have a biopsy. I don't think I will. Whatever the cause, it's the outcome that I am concerned about, though, I can't say I care as much as I might have if my life had gone smoothly and I hadn't lost my first husband suddenly years ago (major, major heartbreak) and I didn't have a very severely disabled 29 year old son who is totally dependent on me. Sort of puts hairloss in a different catagory. I've got bigger worries. Nevertheless, I can't say I don't care at all because I do. I'm trying to make sure that I don't make it worse. That's why it is important to figure out what caused it. Maybe testosterone, maybe Pariet, maybe an autoimmune problem, maybe menopause (and that may actually be because of testosterone dominating the hormone balance), maybe some deficiency (iron, magnesium, B12, who knows). The thing is to find our own way of coping with it. I'm working on that. This site is great. I have learnt a lot. Thanks to all who contribute their thoughts and insights.

Comment by sallylwess on January 13, 2016 at 9:03pm

Sad, I so appreciate your honesty. You expressed my everyday struggles with self esteem, identity, acceptance of aging, and frustration over not knowing what to do with a health concern that had taken over my view of health and general wellness. I'm not sick. I don't have cancer. I do look sick. And I look like I have some weird thing going on when I don't wear my hair. Quite honestly, I find it hard to suddenly feel ugly after a lifetime of being told how beautiful my hair is and what an attractive woman I am. I am not aging well on the inside because of what I see on the outside. Thankfully, my husband listens, says he doesn't really notice my change in appearance, and supports me in my journey. Again, thank you for your honesty. It helps to know I'm not alone in my struggles.

Comment by Sad in chicago on January 13, 2016 at 7:20pm

I think menopause did it.  I was post menopausal when first noticed changes just thinking my hair was thinning (it was never too thick in the first place) and my Mother had thin, fine hair.  I tried Rogaine, Propecia, etc. after being misdiagnosed with female pattern baldness (did a biopsy fancy derm at Rush Hospital in Chicago.  Wrong!  After another year of freaking out, I was finally diagnosed with FFA by another dermatologist.  Didn't even do a biopsy this time, it is so obvious and so by the book if you google it.  No doubt this is it.  Certain it is a post menopausal tragedy.  Very, very unhappy.  Have a clip in piece tht looks pretty good, but will never understand this, never experienced it in family, never heard of it before, and has for sure changed my attitude.   I was absolutely beautiful as a young woman, and am very vain.  My plan on aging gracefully has gone awry!  My eyebrows are gone too, and I am considering tatooing, but need advice here.  What if you don't like them?  Not life threatening, but boy, this sure is a whammy, and sure took the wind out of my sails.  Plus the money spent on products, hairpieces and time spent on worrying about how I look is dreadful.  

OK, I will stop whining.  I just don't have anyone to talk to about this except my husband and I am embarassed in front of hime too.  

My derm says no resolution on this one and she finds it to be a certain socio economic class of woman who experiences it.

Comment by Maz on January 13, 2016 at 9:16am

Yes, I did consider tattooing to disguise the alopecia and I asked the woman who tattooed my eyebrows. She didn't think it would be a good idea. Not sure why. Probably because she's never seen it done. I think it could be tried but considering what it cost to get my eyebrows done I expect the cost would be prohibitive. I think I will ask around this year anyway. We won't know until someone tries it.

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